NHF 68th Annual Meeting Orlando, Florida • …...2016 ANNUAL MeeTiNg PreVieW — OrLANdO, FLOridA 3 N HF hopes that your first Annual Meeting experi - ence is so wonderful that you

INSIDE

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NHF 68th Annual Meeting • Orlando, Florida • PREVIEW ISSUE

Val D. Bias, NHF CEO

Welcome to NHF’s 68th Annual MeetingBy Val D. Bias, NHF CEO

On behalf of NHF’s Board of Directors and our host chapters, the He-

mophilia Foundation of Greater Florida and the Florida Hemo-philia Association Chapter of NHF, we are pleased to welcome you to the National Hemophilia Foundation’s (NHF’s) 68th An-nual Meeting in Orlando, Flori-da, the sunshine state.

Our setting is sunnier and brighter, as is our conference this year. “A brighter future togeth-er” is our theme for the meeting, and that holds true for many people with bleeding disorders. You’ll find sessions covering the revolutionary new drugs to treat bleeding disorders and hepatitis C. Gene therapy trials are ex-panding, so make sure you sit

in on the research update sessions. Maybe you’ll be prompted to part of the “together” theme, enrolling in a clinical trial, participating in the My Life, Our Future genotyping

initiative or getting more involved in chapter events.

This year’s Annual Meeting is unique, in that our meeting is im-mediately followed by the World Federation of Hemophilia (WFH) World Congress. You’ll get a sense of how the international bleeding disorders community works to-gether for a brighter future dur-ing the congress, July 24-28.

Use NHF’s meeting app to stay abreast of all the happenings during the three-day conference. Here are some of the dozens of educational sessions you don’t want to miss:

• Federal Policy Update

• Healthy Steps: Yoga• Reducing Stress from In-

fusion• Joint Health and Pain in

VWD• Recognizing Depression

in Teens• Blood Safety UpdateJoin me Thursday for our

kickoff event, the Opening Ses-sion. Videos, music, speeches and more await, as we lay out our vi-sion for what’s to come together.

OpENINg SESSIONThursday, 5:30-6:45pmOsceola Ballroom C-D

My Life, Our Future, an innovative program of-fering a free genotyping

test to people in the US living with hemophilia A or B, is on the brink of advancing our understanding of hemophilia! More than 5,300 peo-ple have enrolled in the program, with more than 4,400 participants (83%) consenting to contribute to the program’s central research re-pository, which is set to open this year following the enrollment of 5,000 participants. The launch of this robust research repository will officially usher in the second phase of this program as scientists apply to access the largest database of its kind for hemophilia in the world.

“It’s a really exciting time for My Life, Our Future and the hemo-

My Life, Our Future: Our Key to Progress

philia community as we near the launch of the research repository that includes enough samples to make robust scientific analysis possible,” said Barbara Konkle, MD, director of the laboratory at Bloodworks Northwest, where My Life, Our Future genetic test-ing is conducted and the research repository is hosted. “There are so many questions that could be answered through this repository including learning more about

Continued on page 13

Despicable Me Minion Mayhem is open at

Universal Orlando Resort. (Photo courtesy

Visit Orlando).evening.

WALK THE HALL Discover bleeding disorder heroes, nominate

your own heroes, and explore interactive activities to share your greatness

in the Hall of Heroes!*

EXPAND YOUR KNOWLEDGE Learn how Novo Nordisk® supports your

courageous spirit and approach with personalized products and the

NovoSecure™ program.

CREATE YOUR OWN T-SHIRT, HEROIC IDENTITY, AND MORE!*

When you come on multiple days, you will get to design and collect your heroic T-shirt, take a heroic photo in costume, and have more chances to win our Daily and Grand Prize raffl es!*

Novo Nordisk Inc., 800 Scudders Mill Road, Plainsboro, New Jersey 08536 U.S.A.

Novo Nordisk is a registered trademark of Novo Nordisk A/S. © 2016 Novo Nordisk All rights reserved. USA16HDM01169 July 2016

EXPLORE THE HALL OF HEROES AT BOOTH 101 TO QUALIFY FOR THE DAILY AND GRAND PRIZE RAFFLES.*

Visit the Novo Nordisk® booth 1, 2, or 3 days for the whole Hall experience and more chances to win.*

WE ARE READY TO CELEBRATE AND HONOR YOU AT THE

*These activities are not intended for health care professionals. Must be 18 years of age or older to enter.

32016 ANNUAL MEETING PREVIEW — ORLANDO, FLORIDA

NHF hopes that your first Annual Meeting experi-ence is so wonderful that

you can’t wait to return next year. To help you feel welcome and ready for what’s to come, we have a few events planned specifically for you, your family and for teens.

Your first destination should be the Orientation and Wel-come Session on Thursday, July 21, at noon. There you’ll be greeted by staff from our host chapters, the Hemophilia Foundation of Greater Florida and the Florida Hemophilia Association Chapter of NHF, and by Jorge de la Riva, chair of the NHF board of directors. Get tips on which sessions to at-tend, what the Exhibit Hall is all about, and where help is lo-cated. The New Families Re-ception promises to be a fun event where you can learn and

socialize at the same time.Mid-afternoon, teens are in-

vited to the Teen Track Kickoff. Fire up your creative juices as you engage with other teens in a fun team-building exercise that culmi-nates in what’s best described as a “floating spectacle.” Your fearless leaders are the inspiring folks from GutMonkey.

It’s not Annual Meeting ‘til two kickoff events get underway, the Opening Session and Exhibit Hall Opening Reception. Vid-eos, live performances and a mes-sage from NHF’s CEO, Val D. Bias, are the usual ingredients for an exciting Opening Session. Find out what the community has accomplished this year and where it’s headed. Then get ready for your first taste of the Exhibit Hall. Grab a bite, play some games and interact with the many vendors who serve this community.

If your bucket list includes try-ing some new forms of exercise this year, you’ve found the

place for that. The Healthy Steps Series at Annual Meeting allows you to try your hand, and foot, at dancing, Tai chi and yoga. The classes are led by professionals who either have a bleeding dis-order or work with folks who do. Have some fun between sessions, while you learn something new. So wear some comfy clothes and get out of your chair for a while. Note that some of the classes are offered twice, to accommodate morning, afternoon and evening exercisers.

Don’t forget our popular Sat-urday morning eye-opener, the Healthy Steps Fit and Fun Walk/Run. After a few stretching exercises led by a physical thera-pist, the group heads outside for an invigorating walk or run around the beautiful hotel grounds. Dress

for the weather and bring some water, too.

All of the Healthy Steps se-ries of activities will be held in the Florida Exhibit Hall A-D, Exhibit Level.

TaI ChI Thursday, 7:30pm-8:30pm

TaI ChI Friday, 9:00am-9:30am

JuST DaNCEFriday, 9:30am-10:30am

YOgaFriday, 5:00pm-6:00pm

FIT aND FuN Walk/RuNSaturday, 8:00am-9:00amMeet at Registration Florida Foyer, Level 1

YOgaSaturday, 9:00am-10:00am

First and Foremost—Y-O-UTHUrsdAY, JULY 21

ORIENTaTION aND WElCOmE SESSIONThursday, 12:00pm-12:30pm, St. George St, Atrium Level

NEW FamIlIES RECEpTIONThursday, 12:30pm-1:30pm, St. George St, Atrium Level

TEEN TRaCk kICkOFFThursday, 2:45pm-5:00pm, Naples 3

OpENINg SESSIONThursday, 5:30-6:45pm, Osceola Ballroom C-D

ExhIbIT hall OpENINg RECEpTIONThursday, 6:45pm-9:30pm, Florida Exhibit Hall A-D, Exhibit Level

A tropical paradise awaits in the atrium of the Gaylord Palms Resort & Convention Center.

Healthy steps series returns

Women with bleeding disorders face unique issues. That’s why

NHF offers a separate track for women with bleeding disorders. Thursday’s lineup starts with Learning to Make the Ask: Advocating for Yourself as a Woman. Even in this advanced technology age, few people are familiar with women’s bleeding disorders. That’s why you may find yourself educating not only friends and family members, but also your staff at work, your healthcare providers and others. During this session, find out how to communicate your needs and wants, and what tools are avail-able as resources.

Later in the afternoon, you’re encouraged to attend Making Progress: New Initiatives for Women. This session will be led by Robert F. Sidonio, Jr., MD, Clinical Director Hemo-stasis/Thrombosis at Children’s Healthcare of Atlanta. Sidonio has conducted research on car-riers and VWD. Find out what research is uncovering about women’s bleeding disorders—the symptoms, treatment and care advancements. There are new tools for identifying undiag-nosed women, and new web and social media platforms to help you stay connected to the many support systems out there.

Women’s TrackGet your art on at the Art

Therapy for Women session late afternoon. Once again, Sarah Watson, MA, LPC, will lead you in a fun exercise to offload stress. Watson is a licensed professional counselor and art therapist from Michigan, who has mild hemo-philia A. No art experience or ex-pertise required!

And that’s just Thursday’s of-ferings. Friday there’s a women-only session on sex and bleeding disorders, aging gracefully and carriers. Saturday you can learn more about pregnancy, hormone therapy and surgery prep when you have a bleeding disorder. Check your program book or the NHF app for room assignments and time slots.

aDvOCaTINg aS a WOmaNThursday, 1:15pm-2:15pm Osceola 5&6

makINg pROgRESS Thursday, 2:45pm-3:45pm Osceola 5&6

aRT ThERapY Thursday, 4:00pm-5:00pmOsceola 1&2

4 2016 ANNUAL MEETING PREVIEW — ORLANDO, FLORIDA

At this year’s Annual Meet-ing you can be surrounded by nature without going

outside. That’s because our host hotel, the Gaylord Palms Resort & Convention Center, has cre-ated a tropical paradise in its cli-mate-controlled, glass-enclosed atrium. As you walk through the nearly 5-acre biodome, you may hear the soothing sound of a wa-terfall or a lazy stream running past. If your room overlooks the atrium, you’ll feast your eyes on nearly half a million plants, from ferns to orchids and other tropi-cal flowers.

To capture the different fac-ets of Florida, the atrium has special themed areas for you to explore. In the St. Augustine atrium, you’ll find a replica of the historic Castillo de San Mar-cos, the oldest Spanish fort in the US. If the excitement of the Everglades is more your style, watch the live alligator babies being fed there. A nearby lagoon is home to saltwater fish, sting-rays and tarpons. Watch for dai-ly feeding times. A 60’ sailboat cum restaurant beckons you aboard at the Key West Atrium.

Throughout the atrium there are restaurants to enjoy, themed DreamWorks characters for your kids to meet during the evening, and a game arcade for a little friendly competition.

FOOd FAreAlthough NHF’s Annual

Meeting provides many meals, there are restaurants to fill

the bill, if needed. The Wreckers Sports Bar lets you get up close and personal with your favorite ball players through its 37-foot sports screen and 50 HDTVs. The menu includes burgers, wings, ribs, sandwiches and salads.

If a night on the town is what you need, head to the Old Hickory Steakhouse. Sumptuous steaks are served with your choice of several sauces; the cheese cart is highly recommended. At the Villa de Flora, you’ll find Mediterra-nean-style cuisine, where you can serve yourself buffet-style. Sun-day brunch is a favorite among Floridians. SORA serves sushi, and MOOR focuses on fresh sea-food and seasonal ingredients that come from local farmers.

For lighter meals or a snack, there are several options. Get your java jolt at Cocoa Bean,

Hotel Happenings!

Gaylord Palms Resort & Convention Center is the host hotel for the 68th NHF Annual Meeting.

which serves Starbucks coffee, bakery products and sandwiches. Or grab a prepackaged sandwich, salad or yogurt from the fridge. The Emerald Bay Marketplace also services pastries, wraps, sandwiches, salads and desserts. For a fun treat, take your kids to Honeybells Frozen Yogurt, where they can pick the toppings to adorn their yogurt creations.

WOrKiNg iT OFFIt’s summer in Florida, and

you know what that means—the pool is calling. Join your kids as they suit up and head outside to the Cypress Springs Family Fun Water Park. There you’ll find four slides and a treehouse playground area. Or if you need a break from the younger set, the South Beach Pool is an adults-only pool sur-rounded by palm trees, cabanas

and a restaurant and bar.Gym rats who miss their

workouts at home will find a fitness center with an array of machines and free weights. So whether you walk, run, pedal or row, you’ll find a way to move your muscles and stay in shape.

relaxiNgMake sure to pencil in some

time for relaxing during your Annual Meeting experience. Take a book and sit in the atri-um while you sip on a smoothie or a cup of green tea. Or browse the selection of shops for sou-venirs for yourself or gifts for your pet walker back home. The Relache Spa has a variety of ways to help you unwind, from his-and-hers massages to manicures and pedicures. It even has a hair salon.

“Life can only be understood back-wards; but it must be lived forwards.”

That quote by the Danish phi-losopher and theologian Søren Kirkegaard explains why NHF takes time at each Annual Meet-ing for the very important Re-membrance and Celebration. During the hour-long period, friends and family share memo-ries of people who have passed and anecdotes of those still liv-

receptions galore

Every year at NHF’s Annual Meeting we like to make time for important gatherings of groups within the larger group. These receptions allow people who are new or feel isolated to

join the larger bleeding disorders family. Many former strangers walk away with new contacts and renewed hope. Here are some of the receptions in store for you:

FxIII FamIlY RECEpTIONThursday, 4:00 pm-5:00pm Emerald 4, Emerald Bay Lower Level

INhIbITOR FamIlY RECEpTIONThursday, 7:30pm-8:30pmEmerald 4, Emerald Bay Lower Level

TEEN RECEpTIONFriday, 7:00pm-9:00pm, Hotel Arcade

vWD FamIlY CElEbRaTIONFriday, 4:00-6:00pm, Orange Blossom Ballroom, Emerald Bay Atrium Level

remembrance and Celebrationing as a way to commemorate the shared experiences of the bleeding disorders community. If you’ve never been, make sure to attend. The session is very mov-ing and meaningful.

REmEmbRaNCE aND CElEbRaTIONFriday, 12:15pm-1:15pmSarasota

ACCess THe APPDon’t miss a minute of the meeting! Download our meeting mobile app at: www.tripbuildermedia.com/apps/nhf2016. That way you’ll have all the sessions and events right at your fingertips. Create your own personalized schedule, get the latest information or find places to eat, shop, enjoy the great outdoors and more. The app works on iOS products, and on Android smartphones and tablets.

http://www.tripbuildermedia.com/apps/nhf2016

YOUR WAY

PROVEN PROPHYLAXIS

SIMPLE,* TWICE-WEEKLYDOSING SCHEDULE D

=

PROVEN PROPHYLAXI

SIMPLED

+

YOUR DOSING SCHEDULE DD

getaways

*ADYNOVATE allows you to infuse on the same 2 days every week.1† 1.9 (Q1: 0.0; Q3: 5.9) median vs on-demand 41.5 (Q1: 31.7; Q3: 51.1); 4.7 (SD 8.6) mean vs on-demand 40.8 (SD 16.3).1,2

ADYNOVATE provides proven bleed control

+ 95% reduction in median overall ABR with prophylaxisvs on-demand treatment†1

The safety, efficacy, and PK of ADYNOVATE were evaluated in a multicenter, open-label, prospective, nonrandomized, 2-arm clinical study (N=137) that compared the efficacy of a twice-weekly prophylactic treatment regimen to on-demand treatment and determined hemostatic efficacy in the treatment of bleeding episodes.1

Shire, Baxalta, Advate and Adynovate are trademarks of Shire PLC, its subsidiaries or affiliates. USBS/MG159/16-0046

References: 1. ADYNOVATE Prescribing Information. Westlake Village, CA: Baxalta US Inc.2. Data on file. Baxalta Incorporated.

Indication ADYNOVATE is used on-demand to control bleeding in patients 12 years of age and older with hemophilia A. ADYNOVATE can reduce the number of bleeding episodes when used regularly (prophylaxis).

ADYNOVATE is not used to treat von Willebrand disease.

DETAILED IMPORTANT RISK INFORMATIONYou should not use ADYNOVATE if you:• Are allergic to mice or hamster protein • Are allergic to any ingredients in ADYNOVATE or ADVATE

[Antihemophilic Factor (Recombinant)]

Tell your healthcare provider if you are pregnant or breastfeeding because ADYNOVATE may not be right for you.

You should tell your healthcare provider if you:• Have or have had any medical problems.• Take any medicines, including prescription and

non-prescription medicines, such as over-the-counter medicines, supplements or herbal remedies.

• Have any allergies, including allergies to mice or hamsters.

ADYNOVATE [Antihemophilic Factor (Recombinant),PEGylated] Important Information

• Have been told that you have inhibitors to factor VIII (because ADYNOVATE may not work for you).

Your body may form inhibitors to Factor VIII. An inhibitor is part of the body’s normal defense system. If you form inhibitors, it may stop ADYNOVATE from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests for the development of inhibitors to Factor VIII.

You can have an allergic reaction to ADYNOVATE. Call your healthcare provider right away and stop treatment if you get a rash or hives, itching, tightness of the throat, chest pain or tightness, difficulty breathing, lightheadedness, dizziness, nausea or fainting.

The common side effects of ADYNOVATE are headache and nausea. Tell your healthcare provider about any side effects that bother you or do not go away.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.Please see following page for ADYNOVATE Important Facts.

To see if ADYNOVATE may be right for you, visit www.ADYNOVATE.com

ABR=annualized bleeding rate.

For patients 12 years and older with hemophilia A

The risk information provided here is not comprehensive. To learn more, talk with your health care provider or pharmacist about ADYNOVATE. The FDA approved product labeling can be found at www.ADYNOVATE.com or 855-4-ADYNOVATE.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088.

Baxalta, Advate, Adynovate, and Baxject are trademarks ofBaxalta Incorporated.

Baxalta US Inc.Westlake Village, CA 91362 USAU.S. License No. 2020 Issued 11/2015

15E001-ADY-US USBS/MG159/16-0071

What should I tell my healthcare provider before I use ADYNOVATE?You should tell your healthcare provider if you:

• Have or have had any medical problems.

• Take any medicines, including prescription and non-prescription medicines, such as over-the-counter medicines, supplements or herbal remedies.

• Have any allergies, including allergies to mice or hamsters.

• Are breastfeeding. It is not known if ADYNOVATE passes into your milk and if it can harm your baby.

• Are pregnant or planning to become pregnant. It is not known if ADYNOVATE may harm your unborn baby.

• Have been told that you have inhibitors to factor VIII (because ADYNOVATE may not work for you).

Important facts aboutADYNOVATE [Antihemophilic Factor (Recombinant), PEGylated]

This leaflet summarizes important information about ADYNOVATE. Please read it carefully before using this medicine. This information does not take the place of talking with your healthcare provider, and it does not include all of the important information about ADYNOVATE. If you have any questions after reading this, ask your healthcare provider.

What are the possible side effects of ADYNOVATE?You can have an allergic reaction to ADYNOVATE.

Call your healthcare provider right away and stop treatment if you get a rash or hives, itching, tightness of the throat, chest pain or tightness, difficulty breathing, lightheadedness, dizziness, nausea or fainting.

The common side effects of ADYNOVATE are headache and nausea. Tell your healthcare provider about any side effects that bother you or do not go away.

These are not all the possible side effects with ADYNOVATE. You can ask your healthcare provider for information that is written for healthcare professionals.

What is the most important information I need to know about ADYNOVATE?Do not attempt to do an infusion to yourself unless you have been taught how by your healthcare provider or hemophilia center.

You must carefully follow your healthcare provider’s instructions regarding the dose and schedule for infusing ADYNOVATE so that your treatment will work best for you.

What is ADYNOVATE?ADYNOVATE is an injectable medicine used to replace clotting factor (factor VIII or antihemophilic factor) that is missing in people with hemophilia A (also called “classic” hemophilia). Hemophilia A is an inherited bleeding disorder that prevents blood from clotting normally.

ADYNOVATE is used on-demand to control bleeding in patients 12 years of age and older with hemophilia A. ADYNOVATE can reduce the number of bleeding episodes when used regularly (prophylaxis).

ADYNOVATE is not used to treat von Willebrand disease.What else should I know about ADYNOVATE and Hemophilia A?Your body may form inhibitors to Factor VIII. An inhibitor is part of the body’s normal defense system. If you form inhibitors, it may stop ADYNOVATE from working properly. Consult with your healthcare provider to make sure you are carefully monitored with blood tests for the development of inhibitors to Factor VIII.

Medicines are sometimes prescribed for purposes other than those listed here. Do not use ADYNOVATE for a condition for which it is not prescribed. Do not share ADYNOVATE with other people, even if they have the same symptoms that you have.

Who should not use ADYNOVATE?You should not use ADYNOVATE if you:

• Are allergic to mice or hamster protein

• Are allergic to any ingredients in ADYNOVATE or ADVATE

Tell your healthcare provider if you are pregnant or breastfeeding because ADYNOVATE may not be right for you.

How should I use ADYNOVATE?ADYNOVATE is given directly into the bloodstream.

You may infuse ADYNOVATE at a hemophilia treatment center, at your healthcare provider’s office or in your home. You should be trained on how to do infusions by your healthcare provider or hemophilia treatment center. Many people with hemophilia A learn to infuse their ADYNOVATE by themselves or with the help of a family member.

Your healthcare provider will tell you how much ADYNOVATE to use based on your individual weight, level of physical activity, the severity of your hemophilia A, and where you are bleeding.

Reconstituted product (after mixing dry product with wet diluent) must be used within 3 hours and cannot be stored or refrigerated. Discard any ADYNOVATE left in the vial at the end of your infusion as directed by your healthcare professional.

How should I use ADYNOVATE? (cont’d)You may have to have blood tests done after getting ADYNOVATE to be sure that your blood level of factor VIII is high enough to clot your blood.

Call your healthcare provider right away if your bleeding does not stop after taking ADYNOVATE.


The peak season for tourists visiting the Disney theme parks is, you guessed it,

July! So what’s a body to do if you don’t want to get crushed by bus loads of camera-toting tourists and baby buggies on the march?

Here are some tips to beat the crowds and maybe even beat the heat:

• Hit the park early. You and the rides will be cooler.

• Slap on the sunscreen. Reapply if you get wet or sweat.

• Wear a hat with a brim. Make sure babies and chil-dren don bonnets or ball caps.

• Hydrate, hydrate, hydrate. Water is your best friend on sunny, sultry days. Pack frozen water bottles in sealed plastic bags. They will serve as ice packs until they thaw.

• Dress in light-colored fab-rics that breathe. Some clothing, especially run-ning wear, contains fibers that wick away moisture.

Cotton is not king on hot, sticky days. Neither is den-im. When it gets wet, it weighs you down.

• Hitch a ride. Cool off with a train trip around the park.

• Take a siesta. Return to your hotel room or relax poolside during the heat of the day.

• Stay late. Have an early din-ner, then return to the park when other families have gone home for the day. The park is beautiful at night, as is the fireworks display.

• Head to the water rides. There are several rides that are guaranteed to cool you down or soak you to the skin.

• Take in a show or two. Duck into an air-conditioned build-ing where you can get relief from the sun and swarm.

• Pace yourself. Take time to sit on a shady bench, grab an ice cream cone or frozen lem-onade and enjoy the scenery. The landscaping will come to life when you take a moment to take it in.

To promote a more inclusive meeting, NHF is offering a variety of session on von Wil-

lebrand disease (VWD). If you or a loved one has VWD, you’ll have opportunities to not only learn and grow, but share your experi-ences, frustrations and hopes.

The VWD Precon is a nearly four-hour program on Thursday,

VWd Front and CenterBasics of VWD is a 101-type ses-sion. Here you’ll find out how the von Willebrand factor (VWF) pro-tein affects normal blood clotting. The symptoms of VWD, the three types and the laboratory tests used to diagnose it will also be discussed. Treatment therapies will be briefly covered. For a more in-depth discussion, attend the VWD: The Next Level session. You’ll hear about the molecular and cellular biology of the VWF protein. Find out more about the various treatment options, in-cluding the role of prophylaxis.

Check your Program at a Glance for more VWD sessions on Friday and Saturday.

vWD pRECONThursday, 8:00am-11:45amSun A

baSICS OF vWDThursday, 1:15pm-2:15pmOsceola 1&2

vWD: ThE NExT lEvElThursday, 2:45pm-3:45pmOsceola 1&2

Seven Dwarfs Mine Train, a family-friendly coaster that takes guests on a wild journey through the mine “where a million diamonds shine.” (Photo courtesy Visit Orlando)

insiders’ guide to disney

July 21. It will cover what it’s like to live with VWD, giving you the opportunity to identify gaps that NHF needs to fill. So come ready to share what life is like for you and how it could be improved by better programs, treatments and services. The

Each Annual Meeting attendee will receive one free “A Brighter Future Together” raffle game card for each day—Thursday, Friday and Saturday. During Exhibit Hall

hours each day, have your ticket validated at all participating exhibit booths. Your completed ticket gives you a chance to win prizes. Winners will be announced Saturday, July 23, at the NHF Official Annual Meeting and Awards Ceremony. You must be present to claim your prize. Some restrictions apply.

Raffle game participating booths:Alnylam, Baxalta, now part of Shire, Bayer, Biogen, CSL Beh-ring, Florida Hemophilia Association, Genentech, Hemophilia Foundation of Greater Florida, NHF, Novo Nordisk, Pfizer and WFH.

Play the daily raffle game

SeaWorld Orlando’s TurtleTrek® brings guests close to sea turtles and manatees, then immerses them in a sea turtle’s amazing journey in the world’s first 3D 360° dome theater experience. (Photo courtesy SeaWorld

If you or a loved one has VWD, you’ll have

opportunities to not only LEARN AND GROW, but SHARE

your ExPERIENCES, frustrations and hopes.

KJob Number: 21777Revision Nm: 0Date: 06/30/16

YMC580-48333 21" x 14"

Coagulation Factor IX (Recombinant), Albumin Fusion Protein®

UP TO

14-DAYDOSING*

ABOVE

5%for 14 daysat highest

dose

ZEROBLEEDSmedian AsBR


He’s free to infuse only once every 14 days. Are you?The only FDA-approved treatment for hemophilia B with up to 14-day dosing.* Visit us at IDELVION.com.

Important Safety Information

IDELVION is used to control and prevent bleeding episodes in people with hemophilia B. Your doctor might also give you IDELVION before surgical procedures. Used regularly as prophylaxis, IDELVION can reduce number of bleeding episodes.

IDELVION is administered by intravenous injection into the bloodstream, and can be self-administered or administered by a caregiver. Do not inject IDELVION without training and approval from your healthcare provider or hemophilia treatment center.

Tell your healthcare provider of any medical condition you might have, including allergies and pregnancy, as well as all medications you are taking. Do not use IDELVION if you know you are allergic to any of its ingredients, including hamster proteins. Tell your doctor if you previously had an allergic reaction to any FIX product.

Stop treatment and immediately contact your healthcare provider if you see signs of an allergic reaction, including a rash or hives, itching, tightness of chest or throat, dif� culty breathing,

lightheadedness, dizziness, nausea, or a decrease in blood pressure.

Your body can make antibodies, called inhibitors, against Factor IX, which could stop IDELVION from working properly. You might need to be tested for inhibitors from time to time. IDELVION might also increase the risk of abnormal blood clots in your body, especially if you have risk factors. Call your healthcare provider if you have chest pain, dif� culty breathing, or leg tenderness or swelling.

In clinical trials for IDELVION, headache was the only side effect occurring in more than 1% of patients (1.8%), but is not the only side effect possible. Tell your healthcare provider about any side effect that bothers you or does not go away, or if bleeding is not controlled with IDELVION.


Please see brief summary of prescribing information for IDELVION on next page.

*In appropriate people 12 years and older. Talk with your doctor.

A median annualized spontaneous bleeding rate of zero in 7- and 14-day prophylaxis

High and sustained Factor IX levels

Dosing schedule that � ts into your lifestyle

IDELVION is manufactured by CSL Behring GmbH and distributed by CSL Behring LLC.IDELVION® is a registered trademark of CSL Behring Recombinant Facility AG.Biotherapies for Life® is a registered trademark of CSL Behring LLC.

©2016 CSL Behring LLC 1020 First Avenue, PO Box 61501, King of Prussia, PA 19406-0901 USA

www.CSLBehring-us.com www.IDELVION.com IDL16-02-0032 03/2016

IDELVION®, Coagulation Factor IX (Recombinant), Albumin Fusion ProteinInitial U.S. Approval: 2016

BRIEF SUMMARY OF PRESCRIBING INFORMATION

These highlights do not include all the information needed to use IDELVION safely and effectively. Please see full prescribing information for IDELVION, which has a section with information directed speci� cally to patients.

What is IDELVION?

IDELVION is an injectable medicine used to replace clotting Factor IX that is absent or insuf� cient in people with hemophilia B. Hemophilia B, also called congenital Factor IX de� ciency or Christmas disease, is an inherited bleeding disorder that prevents blood from clotting normally.

IDELVION is used to control and prevent bleeding episodes. Your healthcare provider may give you IDELVION when you have surgery. IDELVION can reduce the number of bleeding episodes when used regularly (prophylaxis).

Who should not use IDELVION?

You should not use IDELVION if you have had life-threatening hypersensitivity reactions to IDELVION or are allergic to:

• hamster proteins

• any ingredients in IDELVION

Tell your healthcare provider if you have had an allergic reaction to any Factor IX product prior to using IDELVION.

What should I tell my healthcare provider before using IDELVION?

Discuss the following with your healthcare provider:

• Your general health, including any medical condition you have or have had, including pregnancy, and any medical problems you may be having

• Any medicines you are taking, both prescription and non-prescription, and including any vitamins, supplements, or herbal remedies

• Allergies you might have, including allergies to hamster proteins

• Known inhibitors to Factor IX that you’ve experienced or been told you have (because IDELVION might not work for you)

What must I know about administering IDELVION?

• IDELVION is administered intravenously, directly into the bloodstream.

• IDELVION can be self-administered or administered by a caregiver with training and approval from your healthcare provider or hemophilia treatment center. (For directions on reconstituting and administering IDELVION, see the Instructions for Use in the FDA-Approved Patient Labeling section of the full prescribing information.)

• Your healthcare provider will tell you how much IDELVION to use based on your weight, the severity of your hemophilia B, your age, and other factors. Call your healthcare provider right away if your bleeding does not stop after taking IDELVION.

• Blood tests may be needed after you start IDELVION to ensure that your blood level of Factor IX is high enough to properly clot your blood.

What are the possible side effects of IDELVION?

Allergic reactions can occur with IDELVION. Call your healthcare provider right away and stop treatment if you get a rash or hives, itching, tightness of the chest or throat, dif� culty breathing, light-headedness, dizziness, nausea, or decrease in blood pressure.

Your body can make antibodies, called inhibitors, against Factor IX, which could stop IDELVION from working properly. Your healthcare provider may need to test your blood for inhibitors from time to time.

IDELVION might increase the risk of abnormal blood clots forming in your body, especially if you have risk factors for such clots. Call your healthcare provider if you experience chest pain, dif� culty breathing, or leg tenderness or swelling while being treated with IDELVION.

A common side effect of IDELVION is headache. This is not the only side effect possible. Tell your healthcare provider about any side effect that bothers you or does not go away.

Please see full prescribing information, including FDA-approved patient labeling.


YMC580-48333 21" x 14"


UP TO

14-DAYDOSING*

ABOVE

5%for 14 daysat highest

dose

ZEROBLEEDSmedian AsBR


He’s free to infuse only once every 14 days. Are you?The only FDA-approved treatment for hemophilia B with up to 14-day dosing.* Visit us at IDELVION.com.

Important Safety Information

IDELVION is used to control and prevent bleeding episodes in people with hemophilia B. Your doctor might also give you IDELVION before surgical procedures. Used regularly as prophylaxis, IDELVION can reduce number of bleeding episodes.

IDELVION is administered by intravenous injection into the bloodstream, and can be self-administered or administered by a caregiver. Do not inject IDELVION without training and approval from your healthcare provider or hemophilia treatment center.

Tell your healthcare provider of any medical condition you might have, including allergies and pregnancy, as well as all medications you are taking. Do not use IDELVION if you know you are allergic to any of its ingredients, including hamster proteins. Tell your doctor if you previously had an allergic reaction to any FIX product.

Stop treatment and immediately contact your healthcare provider if you see signs of an allergic reaction, including a rash or hives, itching, tightness of chest or throat, dif� culty breathing,

lightheadedness, dizziness, nausea, or a decrease in blood pressure.

Your body can make antibodies, called inhibitors, against Factor IX, which could stop IDELVION from working properly. You might need to be tested for inhibitors from time to time. IDELVION might also increase the risk of abnormal blood clots in your body, especially if you have risk factors. Call your healthcare provider if you have chest pain, dif� culty breathing, or leg tenderness or swelling.

In clinical trials for IDELVION, headache was the only side effect occurring in more than 1% of patients (1.8%), but is not the only side effect possible. Tell your healthcare provider about any side effect that bothers you or does not go away, or if bleeding is not controlled with IDELVION.


Please see brief summary of prescribing information for IDELVION on next page.

*In appropriate people 12 years and older. Talk with your doctor.

A median annualized spontaneous bleeding rate of zero in 7- and 14-day prophylaxis

High and sustained Factor IX levels

Dosing schedule that � ts into your lifestyle

IDELVION is manufactured by CSL Behring GmbH and distributed by CSL Behring LLC.IDELVION® is a registered trademark of CSL Behring Recombinant Facility AG.Biotherapies for Life® is a registered trademark of CSL Behring LLC.

©2016 CSL Behring LLC 1020 First Avenue, PO Box 61501, King of Prussia, PA 19406-0901 USA

www.CSLBehring-us.com www.IDELVION.com IDL16-02-0032 03/2016

IDELVION®, Coagulation Factor IX (Recombinant), Albumin Fusion ProteinInitial U.S. Approval: 2016

BRIEF SUMMARY OF PRESCRIBING INFORMATION

These highlights do not include all the information needed to use IDELVION safely and effectively. Please see full prescribing information for IDELVION, which has a section with information directed speci� cally to patients.

What is IDELVION?

IDELVION is an injectable medicine used to replace clotting Factor IX that is absent or insuf� cient in people with hemophilia B. Hemophilia B, also called congenital Factor IX de� ciency or Christmas disease, is an inherited bleeding disorder that prevents blood from clotting normally.

IDELVION is used to control and prevent bleeding episodes. Your healthcare provider may give you IDELVION when you have surgery. IDELVION can reduce the number of bleeding episodes when used regularly (prophylaxis).

Who should not use IDELVION?

You should not use IDELVION if you have had life-threatening hypersensitivity reactions to IDELVION or are allergic to:

• hamster proteins

• any ingredients in IDELVION

Tell your healthcare provider if you have had an allergic reaction to any Factor IX product prior to using IDELVION.

What should I tell my healthcare provider before using IDELVION?

Discuss the following with your healthcare provider:

• Your general health, including any medical condition you have or have had, including pregnancy, and any medical problems you may be having

• Any medicines you are taking, both prescription and non-prescription, and including any vitamins, supplements, or herbal remedies

• Allergies you might have, including allergies to hamster proteins

• Known inhibitors to Factor IX that you’ve experienced or been told you have (because IDELVION might not work for you)

What must I know about administering IDELVION?

• IDELVION is administered intravenously, directly into the bloodstream.

• IDELVION can be self-administered or administered by a caregiver with training and approval from your healthcare provider or hemophilia treatment center. (For directions on reconstituting and administering IDELVION, see the Instructions for Use in the FDA-Approved Patient Labeling section of the full prescribing information.)

• Your healthcare provider will tell you how much IDELVION to use based on your weight, the severity of your hemophilia B, your age, and other factors. Call your healthcare provider right away if your bleeding does not stop after taking IDELVION.

• Blood tests may be needed after you start IDELVION to ensure that your blood level of Factor IX is high enough to properly clot your blood.

What are the possible side effects of IDELVION?

Allergic reactions can occur with IDELVION. Call your healthcare provider right away and stop treatment if you get a rash or hives, itching, tightness of the chest or throat, dif� culty breathing, light-headedness, dizziness, nausea, or decrease in blood pressure.

Your body can make antibodies, called inhibitors, against Factor IX, which could stop IDELVION from working properly. Your healthcare provider may need to test your blood for inhibitors from time to time.

IDELVION might increase the risk of abnormal blood clots forming in your body, especially if you have risk factors for such clots. Call your healthcare provider if you experience chest pain, dif� culty breathing, or leg tenderness or swelling while being treated with IDELVION.

A common side effect of IDELVION is headache. This is not the only side effect possible. Tell your healthcare provider about any side effect that bothers you or does not go away.

Please see full prescribing information, including FDA-approved patient labeling.


La Fundación Nacional de Hemofilia da una especial bienvenida a todas las

familias de habla hispana a ¡nuestra Reunión Anual! Se han programado diferentes sesiones teniendo en cuenta sus intereses, así que por favor tome nota de ellas y traiga a toda la familia. Las familias interesadas en asistir a sesio-nes en inglés con traducción simultánea al español pueden consultar la siguiente lista.

sessiONs eN esPAÑOL:

Jueves12:00pm-1:00pmHola y Bienvenidos

2:45pm-3:45pmNo Es Muy Tarde para Salvar Sus Articulaciones

4:00pm-5:00pmFunción del Factor: Cómo la Vida Media le Afecta

Viernes2:45pm-3:45pmPregunta al Experto: Mujeres4:00pm-5:00pmMi Pareja y Yo

5:00pm-6:00pmConversación en Espanol

Sábado9:30am-11:30amNavegando el Seguro de Salud

2:15pm-3:15pmCuando la Cultura Influencia el Cuidado de Salud

TrAdUCidO eN esPAÑOL Traduccion simultanea

estará disponible en cier-tas sesiones. Puede rentar el equipo de traduccion en el nivel 2 del Gaylord Palms Resort & Convention Center. Cerca de el salon Osceola. IMPORTANTE: Por favor re-cuerde devolver los auricula-res cada dia al estand de Tra-ducción. Tendremos traduc-ción simultánea en español para las siguientes sesiones educativas para consumi-dores.

Servicio de traducción patrocinado por Baxalta, now part of Shire.

Bienvenidos, Familias HispanasThursday, July 21st Jueves, 21 de Julio

Sarasota Room– Families/All: Salón Sarasota – Familia/Todos:

Blood Safety Update: From A to MSM to Zika (1:15pm-2:15pm)

Actualización de la seguridad de la sangre: De la A hasta MSM y el virus de Zika (1:15pm-2:15pm)

The Comprehensive Care Show (2:45pm-3:45pm) El Show del Cuidado Comprensivo (2:45pm-3:45pm)

What You Want vs. What You Need: Realities of Access to Care (4:00pm-5:00pm)

Que quiere vs. Que necesita: La realidad del acceso al cuidado (4:00pm-5:00pm)

Osceola Ballroom B: Salón Osceola B:

Industry Symposium (Baxalta): Factor VIII (4:00pm-5:30pm) Simposio de Industria (Baxalta): Factor VIII (4:00pm-5:30pm)

Osceola Ballroom C / D: Salón Osceola C / D:

Opening Session Plenary (5:30pm-6:45pm) Sesion Plenaria de Inauguración (5:30pm-6:45pm)

Friday, July 22nd Viernes, 22 de Julio

Osceola Ballroom A: Salón Osceola A:

Industry Symposium (Pfizer): Grow, Live, Be: Transitioning Through Life Together (7:00am-9:00am)

Simposio de Industria (Pfizer): Crece, Vive, Se tu mismo: Unidos en la transición de la vida (7:00am-9:00am)

Sarasota Room– Families/All: Salón Sarasota – Familia/Todos:

Family Genetics for All Bleeding Disorders (9:30am-10:30am) Genetica de familia para todos los trastornos hemorrágicos

(9:30am-10:30am)

Yes, You Can: Reducing Stress from Infusion (10:45am-11:45am)

Si, Usted puede reducer el estres de la infusion (10:45am-11:45am)

Caregiver Fatigue (1:30pm-2:30pm) Fatiga de la cuidadora de salud (1:30pm-2:30pm)

Osceola Room 1&2 Salon Osceola 1&2

Basics of Hemophilia (4:00pm-5:00pm) Hemofilia básica (4:00pm-5:00pm)

Tampa Room - Spouse and Partner: Salón Tampa – Pareja y esposos:

You, Me and It: Relationships and Bleeding Disorders (1:30pm-2:30pm)

Usted, yo y él: Relaciones y trastornos hemorrágicos (1:30pm-2:30pm)

We' re on the Same Team: Building Patient-Provider Relationships (2:45pm-4:45pm)

Estamos en el mismo equipo: Construyendo una relación entre pacientes y proveedores (2:45pm-4:45pm)

Osceola Ballroom B: Salón Osceola B:

Industry Symposium (Baxalta): VWD (6:00pm-8:00pm) Simposio de Industria (Baxalta): VWD (6:00pm-8:00pm)

Saturday, July 23rd Sábado, 23 de Julio

Osceola Room 1&2: Salón Osceola 1&2:

Joint Health and Pain in VWD (9:30am-11:00am) Salud de las articulaciones y dolor en VWD (9:30am-11:00am)

Communicating in the Workplace (11:15am-12:15pm) Comunicación en el lugar de trabajo (11:15am-12:15pm)

Osceola Ballroom C: Salón Osceola C:

Industry Symposium (Genentech): Current and Changing Technologies in Hemophilia (11:45am-1:00pm)

Simposio de Industria (Genentech): Tecnologías actuales y cambiantes en Hemofilia (11:45am-1:00pm)

Tampa Room Salón Tampa

Ask the Experts: Inhibitors (2:15pm-3:15pm) Pregunta a los Expertos: Inhibidores (2:15pm-3:15pm)

Indications for FEIBA [Anti-Inhibitor Coagulant Complex]FEIBA is an Anti-Inhibitor Coagulant Complex indicated for use in hemophilia A and B patients with inhibitors for:• Control and prevention of bleeding episodes• Use around the time of surgery• Routine prophylaxis to prevent or reduce the frequency of bleeding episodes.

FEIBA is not indicated for the treatment of bleeding episodes resulting from coagulation factor deficiencies in the absence of inhibitors to coagulation factor VIII or coagulation factor IX. Detailed Important Risk Information for FEIBAWARNING: EVENTS INVOLVING CLOTS THAT BLOCK BLOOD VESSELS• Blood clots that block blood vessels and their effects have been reported during

postmarketing surveillance following infusion of FEIBA, particularly following the administration of high doses and/or in patients with a risk of forming blood clots.

• If you experience any of these side effects, call your doctor right away.

You should not use FEIBA if:• You had a previous severe allergic reaction to the product (reactions causing

discomforts that are damaging and life threatening)• You have signs of development of small blood vessel clots throughout the body• You have sudden blood vessel clots or blocked blood vessels, (e.g., heart attack

or stroke)

Events involving blood clots blocking blood vessels can occur with FEIBA, particularly after receiving high doses and/or in patients with risk factors for clotting.Infusion of FEIBA should not exceed a dose of 100 units per kg body weight every 6 hours and daily doses of 200 units per kg of body weight. Maximum injection or infusion rate must not exceed 2 units per kg of body weight per minute.

At first sign or symptom of a sudden blood vessel clot or blocked blood vessel (e.g., chest pain or pressure, shortness of breath, altered consciousness, vision, or speech, limb or abdomen swelling and/or pain), stop FEIBA administration promptly and seek emergency medical treatment.

Allergic-type hypersensitivity reactions, including severe, sometimes fatal allergic reactions that can involve the whole body, can occur following the infusion of FEIBA. Call your doctor or get emergency treatment right away if you get a rash, hives or welts, experience itching, tightness of the throat, vomiting, abdominal pain, chest pain or tightness, difficulty breathing, lightheadedness, dizziness, nausea or fainting.

Because FEIBA is made from human plasma it may carry a risk of transmitting infectious agents, e.g., viruses, the variant Creutzfeldt-Jakob disease (vCJD) agent and, theoretically, the Creutzfeldt-Jakob disease (CJD) agent.

The most frequent side effects observed during the prophylaxis trial were anemia, diarrhea, bleeding into a joint, signs of hepatitis B surface antibodies, nausea, and vomiting.

The serious side effects seen with FEIBA are allergic reactions and clotting events involving blockage of blood vessels, which include stroke, blockage of the main blood vessel to the lung, and deep vein blood clots.

Call your doctor right away about any side effects that bother you during or after you stop taking FEIBA.

Please see next page for FEIBA Brief Summary of Prescribing Information. To see the Full Prescribing Information, including BOXED WARNING on blood clots, go to www.FEIBA.com.


Baxalta and FEIBA are trademarks of Baxalta Incorporated June 2016 USBS/145/16-0016(1)

References: 1. Pergantou H, Matsinos G, Papadopoulos A, Platokouki H, Aronis S. Comparative study of validity of clinical, X-ray and magnetic resonance imaging scores in evaluation and management of haemophilic arthropathy in children. Haemophilia. May 2006;12(3):241-247. 2. Gringeri A, Ewenstein B, Reininger A. The burden of bleeding in haemophilia: is one bleed too many? Haemophilia. Jul 2014;20(4):459-463. 3. FEIBA Prescribing Information. Westlake Village, CA: Baxter Healthcare Corporation; November 2013. 4. Antunes SV, Tangada S, Stasyshyn O, et al. Randomized comparison of prophylaxis and ondemand regimens with FEIBA NF in the treatment of haemophilia A and B with inhibitors. Haemophilia. 2014;20(1):65-72.

* Based on the results from the FEIBA PROOF clinical study of 36 hemophilia A and B patients with inhibitors receiving FEIBA for prophylaxis or on-demand treatment for 12 months.4

†Of those patients who achieved zero bleeding events, two-thirds completed 12 months of the study.4

72%in median ABR with prophylaxis treatment3

REDUCTION

NO BLEEDSoccurred in 18% (3 out of 17) of patients on FEIBA prophylaxis in a clinical study†3

28.7 median ABR with on-demand treatment3,4

629 bleeding episodes occurred during on-demand treatment3,4

7.9 median ABR with prophylaxis treatment3,4

196 bleeding episodes occurred during prophylaxis treatment3,4

FEIBA is the ONLY FDA-approved treatment indicated for use in hemophilia A and B patients with inhibitors for routine prophylaxis.3

Median ABR with prophylaxis vs on-demand3

…with FEIBA prophylaxis patients can have more bleed-free days as compared to on-demand treatment.

Every joint bleed has the potential to do permanent damage1,2

LIVE IN THE BLEED-FREE MOMENT

Actual FEIBA patient.

Important Facts about FEIBA (Anti-Inhibitor Coagulant Complex)

What is FEIBA used for? FEIBA (Anti-Inhibitor Coagulant Complex) is used for people with Hemophilia A or B with Inhibitors to control and prevent bleeding episodes, before surgery, or routinely to prevent or reduce the number of bleeding episodes. It is NOT used to treat bleeding conditions without inhibitors to Factor VIII or Factor IX.

When should I not take FEIBA? You should not take FEIBA if you have had hypersensitivity or an allergic reaction to FEIBA or any of its components, including factors of the kinin generating system, if you have a condition called Disseminated Intravascular Coagulation, which is small blood clots in various organs throughout the body, or currently have blood clots or are having a heart attack. Make sure to talk to your healthcare provider about your medical history.

What Warnings should I know about FEIBA? FEIBA can cause blood clots, including clots in the lungs, heart attack, or stroke, particularly after high doses of FEIBA or in people with a high risk of blood clots. Patients that have a risk of developing blood clots should discuss the risks and benefits of FEIBA with their healthcare provider since FEIBA may cause blood clots. FEIBA can cause hypersensitivity or allergic reactions and infusions site reactions, and these reactions can be serious. Because FEIBA is made from human plasma, it may carry the risk of transmitting infectious agents, for example, viruses, including Creutzfeldt-Jakob disease (CJD) agent, and the variant CJD agent. Although steps have been taken to minimize the risk of virus transmission, there is still a potential risk of virus transmission.

What should I tell my healthcare provider? Make sure to discuss all health conditions and medications with your healthcare provider. If you are pregnant or are planning to become pregnant, or are a nursing mother, make sure to talk with your healthcare provider for advice on using FEIBA.

What are the side effects of FEIBA? The most frequent side effects of FEIBA are: low red blood cell count, diarrhea, joint pain, hepatitis B surface antibody positivity, nausea, and vomiting. The most serious side effects of FEIBA include: hypersensitivity reactions, including anaphylaxis, stroke, blood clots in the lungs, and blood clots in the veins. Always immediately talk with your healthcare provider if you think you are experiencing a side effect.

What other medications might interact with FEIBA? The use of other clotting agents with FEIBA is not recommended, for example, tranexamic acid and aminocaproic acid. Be sure to talk with your healthcare provider and pharmacist about all medications and supplements you are taking.

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800-FDA-1088

The risk information provided here is not comprehensive. To learn more, talk about FEIBA with your healthcare provider or pharmacist. The FDA-approved product labeling can be found at http://www.feiba.com/us/forms/feiba_pi.pdf or by calling 1-800-423-2090 and selecting option 5.

Baxalta and FEIBA are trademarks of Baxalta Incorporated June 2016 USBS/145/16-0016(1)


Within the past decade or so, people with hep-atitis C virus (HCV)

infection have seen vast im-provements in therapies. No longer do they struggle through 48 weeks of ribavirin/interferon and other drugs, feeling like they have the flu. Now there is an array of once daily pills that can produce sustained viral re-sponse (SVR), considered a cure, within 24 weeks or so for people with hemophilia.

Further, there are new ther-apies to treat HCV genotypes 1 and 3, considered difficult to treat. In addition, some of the drugs are effective in people co-infected with HCV and HIV-1, those with cirrhosis and people

Eli Roland (from left) and Heidi Ramsey, Byhalia, MS, make some new friends with Timothy Wilcox, Monroe, OH, and his dog Adahy at last year’s NHF Annual Meeting in Dallas.

Heralding Hep C improvements

in whom HCV has recurred after a liver transplant.

At the Hepatitis C Update session on Thursday afternoon, you’ll hear the latest on all things hep C. The speaker is transplant hepatologist Ayman Koteish, MD, of the Florida Hospital. Dur-ing the session, find out about management of cirrhosis and its complications, coordinating liver care with your hemophilia treat-ment center (HTC) and what’s in-volved in a liver transplant. Hear about the latest developments in drug therapies and what’s in store for the future.

hEpaTITIS C upDaTEThursday, 2:45pm-3:45pmOsceola 4

Blood safety is top of the mind for those who use blood prod-ucts. And so it is for govern-

ment agencies, manufacturers, blood collection sites and donors as well.

At the Blood Safety Update: From A to MSM to Zika session you’ll hear from a panel of experts about the latest threats to blood safety, including the Zika virus, and how they’re being handled. You’ll also find out about the US Food and Drug Administration’s

What a PainAlthough experiencing pain

differs from one person to another, when poppy

or bro, mama or sis is in pain, everybody in the family feels it. During the Thursday afternoon session, Pain in the Bleeding Disorders Community: A Call to Action, your input on your perception of pain or secondhand experience will be taken. Through an interactive, audience-response system, you can be a part of the solution, not the problem, when it comes to pain from bleeding disorders. You will hear from

some treaters in the community, including hematologists and nurses, who have or currently are participating in pain man-agement research studies.

Your responses will help shape future recommendations on pain treatment and manage-ments. So, come, participate and let your voice help make a difference in putting pain in its place going forward

paIN, Call TO aCTIONThursday, 2:45pm-3:45pm Tampa

Blood safety for All(FDA’s) change in blood donor deferral policies.

Come hear how the blood sup-ply is being protected. Find out about the establishment of a na-tional blood safety monitoring system, a collaborative effort be-tween the FDA and the National Heart, Lung, and Blood Institute (NHLBI).

blOOD SaFETY upDaTEThursday, 1:15pm-2:15pmSarasota

TAKe A WALK ALONg THe ArTsideOnce again, the creative in our community will be displaying works of art in the Blood Work Art Walk, located in the Florida Exhibit Hall, Level 1. Annual Meeting participants enjoy the per-sonal experience of taking in these treasures, a real break from the hustle and bustle of our busy meeting.

The pieces of art will be on display Thursday, 6:45pm-9:30pm; Friday, 9:00am-6:00pm and Saturday, 9:00am-1:00pm.

what causes hemophilia, why it affects people differently, and why some patients develop inhibitors to treatment. The participants who have chosen to opt into this repository are the keys to understanding the mysteries of hemophilia.”

There will be several op-portunities during this year’s Annual Meeting to learn more about My Life, Our Future and how you can get involved:

Val D. Bias, CEO of the National Hemophilia Founda-tion (NHF), will provide an update on the program dur-ing the Opening Session on Thursday, July 21 at 5:45 pm. The program will be featured in two interactive educational sessions with audience Q&A:

• “My Life, Our Future: Creating a Brighter Fu-ture for Generations to Come”: Friday, July 22 from 10:45am-11:45am in Osceola 5&6.

• “What the Science Says: African Americans and Bleeding Disorders”: Saturday, July 23 from 11:15am-12:15pm in Osceola 3.

Exemplary hemophilia treatment centers will be hon-ored for their contributions to My Life, Our Future during

the the NHF Official Annual Meeting and Awards Ceremo-ny on Saturday, July 23 at 3:30pm.

My Life, Our Future part-ners will be available at the program Booth #1007 in the Exhibit Hall throughout the meeting to provide educa-tional materials and answer questions.

Not planning to attend this year’s Annual Meeting but still interested in learning more? Visit www.MyLifeOur-Future.org to sign up for regu-lar program updates.

My Life, Our Future is a partnership between the Na-tional Hemophilia Foundation, American Thrombosis and He-mostasis Network, Bloodworks Northwest and Biogen. My Life, Our Future is currently available at nearly 100 hemo-philia treatment centers across the US.

My Life, Our FutureContinued from page 1 There will be several

opportunities dur-ing this year’s Annual Meeting to learn more

about My Life, Our Future and how you

can get involved.

http://www.MyLifeOurFuture.org

http://www.MyLifeOurFuture.org


Exhibitor News features items provided by exhibitors at the NHF Annual Meeting who are also advertising in this publication. The content of these items, as well as the content of their ads, is the sole responsibility of the advertisers. National Hemophilia Foundation and CustomNEWS, Inc., are not responsible for this content.

Come visit Baxalta, now part of Shire, at Booth 307! We are continuing the legacy of 60 years, and are committed to putting patients at the center of every-thing we do.

This year, we will be hosting a series of True Identity presentations at NHF’s 2016 Annual Meeting. True Identity is a supportive program for patients and caregivers that provides a forum to share real patient stories. True Identity is here to help you discover who you are beyond your disorder. Get inspired by others in the community!

During booth hours throughout the conference, hear real patients share their journeys, the importance of family, the

Your courageous spirit and approach have inspired Novo Nordisk to create the Hall of Heroes at the National Hemo-philia Foundation’s (NHF’s) 68th Annual Meeting at Booth 101. Each day, you will be able to learn about Novo Nordisk products, discover Novo Nordisk heroes, thank your own heroes and explore inter-active activities to share your greatness.

Create Your Own T-Shirt, Heroic Identity and More!

• Suit Up! T-Shirt Station: Create your own T-shirt with a personal-ized superhero emblem! Pick up Friday 12 PM or Saturday.

• Food Fit for Heroes: Grab some ZAPitizers, Super Sips and more as you make your way through the Hall!

• Hero Spotlight: Get ready to be interviewed and be part of a video montage in our booth for a true Heroes experience!

Explore the Hall to Enter Our Raffles*Visit specific sections of the Hall of For people with hemophilia A and

their families, the risk of inhibitor de-velopment can be a real concern. Inhibi-tors are a serious complication of factor replacement therapy.

What are inhibitors?Inhibitors are antibodies produced

by the immune system that mistakenly target replacement factor concentrate as a foreign substance, rather than as a therapy. These antibodies then at-tack the factor VIII (FVIII) molecules, interfering with or blocking the ability of FVIII to stop a bleeding episode.

Inhibitors can:• Make treatment less effective• Lead to uncontrolled bleeding,

joint damage and pain• Increase the cost of medical care

by as much as 10 times

ments following a denial from a com-mercial health insurance plan.

Baxalta’s Hematology Support web-site also provides information on Insur-ance Education and Healthcare Reform, including the ability to sort through insurance options and make choices with the help of informational guides, worksheets, live educational events, newsletters and more.

These are just few of the useful ser-vices you will find on Baxalta’s Hematol-ogy Support website. We encourage you to visit the website: www.hematologysup-port.com or you can call the Hematology Support Center toll-free: (888) BAX-8379 Monday through Friday between 8:30 AM and 8:00 PM ET. A representative will be happy to assist you.

Baxalta’s Hematology support WebsiteBaxalta’s Hematology Support web-

site (www.hematologysupport.com) provides a one-stop online resource for Baxalta’s programs related to access and affordability for hematology treatment.

Baxalta’s Hematology Support web-site provides information on Baxalta’s CoPay Assistance program, in which eli-gible patients with commercial insurance can save up to $12,000 every 12 months on a Baxalta factor or bypass product, regardless of household income.

You can also learn more about Bax-alta’s product programs including FREE-DOM OF CHOICE, where new patients can see if they qualify for free doses of select Baxalta hemophilia treatments, and SMART START, which offers eligible individuals 12 months of free medication for eligible Baxalta hemophilia treat-

We Are ready to Celebrate and Honor YOU at the Hall of Heroes!

Heroes to become eligible for the Daily raffle and Grand Prize raffles.*

Raffle Prizes*One lucky winner will be chosen to

take home Thursday’s raffle prize: a Super Hero Bedding Set. Explore the entire Hall of Heroes to become eligible to receive the Grand Prize: an Xbox® Gaming Pack. The Daily and Grand Prize raffle* winners will be announced at the Novo Nordisk booth on Saturday at noon.

Stand Tall With Your Fellow Heroes at the NHF 2016!

Visit the Hall of Heroes at Novo Nor-disk Booth 101

*These activities are not intended for healthcare professionals. Must be 18 years of age or older to enter.

Unless otherwise noted, Novo Nordisk Inc., the sponsor or holder of this meeting/event, is solely responsible for its content, including any information presented or distributed during the meeting/event.

The Patient Journeynecessity of a solid support system and experiences on Baxalta’s family of products. We would also like to hear from YOU and learn about your journey! Come get to know us and our products as we get to know more about you.

In addition to the events at the booth, we will be hosting an educational symposium on Thursday July 21st, 2016 at 4:00 PM. This will be a unique opportunity to hear from a panel of speakers including patients, a caregiver and a doctor who will share their experiences about managing, living and treating hemophilia A.

We look forward to seeing you in Booth 307, where you can learn more about Bax-alta’s products!

Making sense of inhibitors: The Main Challenge in Hemophilia A Treatment

Who is at risk of developing inhibi-tors?

Inhibitors can develop in up to 35 percent of people with hemophilia A who are being treated with FVIII. Anyone with hemophilia A can develop inhibitors at any time, regardless of age or disease severity. Genetic and environmental fac-tors may increase the risk.

Talk to your doctor about how you can reduce your risk of developing an inhibitor.

The good news: inhibitors CAN be treated

For people with inhibitors, treatment can require infusing high volumes of FVIII.

The goals of such treatment are to:• Raise factor levels• Decrease frequency or severity

of bleeding• Prevent bleeding complications To learn more about inhibitors, please

visit Grifols Booth #111 at NHF 2016.

Rising 17 stories into the Florida sky, Cinderella Castle in the Magic Kingdom at Walt Disney World Resort serves as a land-mark for park visitors and provides an entry-way into Fantasyland. (Photo courtesy Visit Orlando.)

From the colossal return of King Kong, to a “Galaxy Far, Far Away” coming closer than ever, Disney is sure to delight children and

children at heart.

UNiVersAL OrlaNdO resOrTAt Universal’s Islands of Adventure “Skull

Island: Reign of Kong” will honor one of the most monumental figures in movie history, King Kong. Guests will board massive off-road vehicles and explore ancient temple structures while encountering hostile natives and fending off unspeakable terrors.

WALT disNeY WOrLd resOrT

Epcot guests can cool off in the kingdom of Arendelle when the highly-anticipated attrac-tion “Frozen Ever After” opens in the Norway Pavilion. The family adventure set in the magical world of “Frozen” will feature the popular story of the royal sisters, hit songs and new technol-

Orlando Welcomes Box Office Hits and Big Thrills As New Attractions Premiere this summer

ogy for an icy trek that is sure to warm hearts.A new flight path will open for the popular

attraction “Soarin’” at Epcot this summer. The updated version of the ride, called “Soarin’ Around the World,” includes a whole new film. Guests will discover new entertainment around every corner this summer with the debut of four new shows across the parks as well.

LegOlaNd FLOridA resOrTAs Central Florida heats up, guests can cool

off at the new Creative Cove at LEGOLAND Water Park. This new area invites young visitors to build and race their own LEGO boats.

There’s also a new 4D movie, “LEGO NEXO KNIGHTS 4D: The Book of Creativity.” Characters from the popular LEGO NEXO KNIGHTS series battle forces of evil in this new immersive experi-ence, combining 3D computer animation with “4D,” real-world effects that bring the high-tech action bursting off the screen and into the audience.

http://www.hematologysupport.com



Shire, Baxalta, Freedom of Choice, Hematology Support Center Logo, Smart Start, and We’ve got you covered, are trademarks of Shire plc, its subsidiaries or affiliates. June 2016 USBS/MG1/16-0464

Your treatment is a must. Support should be too.We can’t wait to see you next week. Stop

by Booth 307 to learn about the ways the

Hematology Support Center (HSC) can

help. Find out if any of Baxalta’s assistance

programs are right for you.

Support designed with you in mind.Call 1-888-229-8379 or visit hematologysupport.com.

Get the details on HSC:Free TrialsThe FREEDOM OF CHOICE Program offers eligible individuals a free trial of a Baxalta treatment

SMART START ProgramReceive up to 12 months of free medication following a denial from a commercial health plan (for eligible individuals)

CoPay AssistanceYou might be eligible for up to $12,000 a year in CoPay support with Baxalta’s CoPay Assistance Program

Insurance Support Services (ISS)Get help locating and comparing insurance options through the Health Insurance Marketplace

Legal Assistance Make sure you understand your rights with free legal services from Patient Services, Inc. (PSI)

Patient AssistanceIf you’re a patient without insurance, you might be able receive your treatment at no cost


YMC581-48169 PG 1-2 21” x 14”

WEEKLYAVAILABLE

ZEROBLEEDS

(median AsBR*)

NATURALFACTORVIII

COMPARABLE TO

Please see the following brief summary of full prescribing information on the adjacent page, and the full prescribing information, including patient product information, at AFSTYLA.com.

AFSTYLA is manufactured by CSL Behring GmbH and distributed by CSL Behring LLC. AFSTYLA® is a registered trademark of CSL Behring Recombinant Facility AG. Biotherapies for Life® is a registered trademark of CSL Behring LLC.

©2016 CSL Behring LLC 1020 First Avenue, PO Box 61501, King of Prussia, PA 19406-0901 USA www.CSLBehring-us.com www.AFSTYLA.com AFS16-05-0082 6/2016

For adults and children with hemophilia A

REACH HIGHERWith the Long-lasting Protection of AFSTYLA

AFSTYLA is the first and only recombinant Factor VIII that delivers proven, long-lasting bleed protection with a novel single-chain design

Zero inhibitors observed—Low incidence of side effects in clinical trialsIn clinical trials, dizziness and allergic reactions were the most common side effects.

In clinical trials, whether dosed 2 or 3 times a week

Identical to natural Factor VIII once activated

FDA-approved for dosing 2 or 3 times a week

Visit AFSTYLA.com to sign up for the latest news

*Annualized spontaneous bleeding rate in clinical trials (interquartile range [IQR]=0–2.4 for patients ≥12 years; 0–2.2 for patients <12 years).

Important Safety InformationAFSTYLA is used to treat and control bleeding episodes in people with hemophilia A. Used regularly (prophylaxis), AFSTYLA can reduce the number of bleeding episodes and the risk of joint damage due to bleeding. Your doctor might also give you AFSTYLA before surgical procedures.

AFSTYLA is administered by intravenous injection into the bloodstream, and can be self-administered or administered by a caregiver. Your healthcare provider or hemophilia treatment center will instruct you on how to do an infusion. Carefully follow prescriber instructions regarding dose and infusion schedule, which are based on your weight and the severity of your condition.

Do not use AFSTYLA if you know you are allergic to any of its ingredients, or to hamster proteins. Tell your healthcare provider if you previously had an allergic reaction to any product containing Factor VIII (FVIII), or have been told you have inhibitors to FVIII, as AFSTYLA might not work for you. Inform your healthcare provider of all medical conditions and problems you have, as well as all medications you are taking.

Immediately stop treatment and contact your healthcare provider if you see signs of an allergic reaction, including a rash or hives, itching, tightness of chest or throat, difficulty breathing, lightheadedness, dizziness, nausea, or a decrease in blood pressure.

Your body can make antibodies, called inhibitors, against FVIII, which could stop AFSTYLA from working properly. You might need to be tested for inhibitors from time to time. Contact your healthcare provider if bleeding does not stop after taking AFSTYLA.

In clinical trials, dizziness and allergic reactions were the most common side effects. However, these are not the only side effects possible. Tell your healthcare provider about any side effect that bothers you or does not go away.



YMC581-48169 PG 1-2 21” x 14”

WEEKLYAVAILABLE

ZEROBLEEDS

(median AsBR*)

NATURALFACTORVIII

COMPARABLE TO

Please see the following brief summary of full prescribing information on the adjacent page, and the full prescribing information, including patient product information, at AFSTYLA.com.

AFSTYLA is manufactured by CSL Behring GmbH and distributed by CSL Behring LLC. AFSTYLA® is a registered trademark of CSL Behring Recombinant Facility AG. Biotherapies for Life® is a registered trademark of CSL Behring LLC.

©2016 CSL Behring LLC 1020 First Avenue, PO Box 61501, King of Prussia, PA 19406-0901 USA www.CSLBehring-us.com www.AFSTYLA.com AFS16-05-0082 6/2016

For adults and children with hemophilia A

REACH HIGHERWith the Long-lasting Protection of AFSTYLA

AFSTYLA is the first and only recombinant Factor VIII that delivers proven, long-lasting bleed protection with a novel single-chain design

Zero inhibitors observed—Low incidence of side effects in clinical trialsIn clinical trials, dizziness and allergic reactions were the most common side effects.

In clinical trials, whether dosed 2 or 3 times a week

Identical to natural Factor VIII once activated

FDA-approved for dosing 2 or 3 times a week

Visit AFSTYLA.com to sign up for the latest news

*Annualized spontaneous bleeding rate in clinical trials (interquartile range [IQR]=0–2.4 for patients ≥12 years; 0–2.2 for patients <12 years).

Important Safety InformationAFSTYLA is used to treat and control bleeding episodes in people with hemophilia A. Used regularly (prophylaxis), AFSTYLA can reduce the number of bleeding episodes and the risk of joint damage due to bleeding. Your doctor might also give you AFSTYLA before surgical procedures.

AFSTYLA is administered by intravenous injection into the bloodstream, and can be self-administered or administered by a caregiver. Your healthcare provider or hemophilia treatment center will instruct you on how to do an infusion. Carefully follow prescriber instructions regarding dose and infusion schedule, which are based on your weight and the severity of your condition.

Do not use AFSTYLA if you know you are allergic to any of its ingredients, or to hamster proteins. Tell your healthcare provider if you previously had an allergic reaction to any product containing Factor VIII (FVIII), or have been told you have inhibitors to FVIII, as AFSTYLA might not work for you. Inform your healthcare provider of all medical conditions and problems you have, as well as all medications you are taking.

Immediately stop treatment and contact your healthcare provider if you see signs of an allergic reaction, including a rash or hives, itching, tightness of chest or throat, difficulty breathing, lightheadedness, dizziness, nausea, or a decrease in blood pressure.

Your body can make antibodies, called inhibitors, against FVIII, which could stop AFSTYLA from working properly. You might need to be tested for inhibitors from time to time. Contact your healthcare provider if bleeding does not stop after taking AFSTYLA.

In clinical trials, dizziness and allergic reactions were the most common side effects. However, these are not the only side effects possible. Tell your healthcare provider about any side effect that bothers you or does not go away.




581-48169 PG 3

AFSTYLA®, Antihemophilic Factor (Recombinant), Single ChainFor Intravenous Injection, Powder and Solvent for InjectionInitial U.S. Approval: 2016

BRIEF SUMMARY OF PRESCRIBING INFORMATIONThese highlights do not include all the information needed to use AFSTYLA safely and effectively. Please see full prescribing information for AFSTYLA, which has a section with information directed specifically to patients.

What is the most important information I need to know about AFSTYLA?

• Your healthcare provider or hemophilia treatment center will instruct you on how to do an infusion on your own.

• Carefully follow your healthcare provider’s instructions regarding the dose and schedule for infusing this medicine.

What is AFSTYLA?

• AFSTYLA is a medicine used to replace clotting Factor VIII that is missing in patients with hemophilia A.

• Hemophilia A is an inherited bleeding disorder that prevents blood from clotting normally.

• Does not contain human plasma derived proteins or albumin. • Your healthcare provider may give you this medicine when you have surgery. • Is used to treat and control bleeding in all patients with hemophilia A. • Can reduce the number of bleeding episodes when used regularly (prophylaxis) and

reduce the risk of joint damage due to bleeding. • Is not used to treat von Willebrand disease.

Who should not use AFSTYLA?

You should not use AFSTYLA if you: • Have had a life-threatening allergic reaction to it in the past. • Are allergic to its ingredients or to hamster proteins.

Tell your healthcare provider if you are pregnant or breastfeeding because AFSTYLA may not be right for you.

What should I tell my healthcare provider before using AFSTYLA?

Tell your healthcare provider if you: • Have or have had any medical problems. • Take any medicines, including prescription and non-prescription medicines, such as

over-the-counter medicines, supplements or herbal remedies. • Have any allergies, including allergies to hamster proteins. • Have been told you have inhibitors to Factor VIII (because this medicine may not

work for you).

How should I use AFSTYLA?

• Administer directly into the bloodstream. • Use as ordered by your healthcare provider. • You should be trained on how to do intravenous injections by your healthcare provider

or hemophilia treatment center. Once trained, many patients with hemophilia A are able to inject this medicine by themselves or with the help of a family member.

• Your healthcare provider will tell you how much to use based on your weight, the severity of your hemophilia A, and where you are bleeding.

• You may need to have blood tests done after getting to be sure that your blood level of Factor VIII is high enough to clot your blood.

• Call your healthcare provider right away if your bleeding does not stop after taking this medicine.

What are the possible side effects of AFSTYLA?

• Allergic reactions may occur. Immediately stop treatment and call your healthcare provider right away if you get a rash or hives, itching, tightness of the chest or throat, difficulty breathing, light-headedness, dizziness, nausea, or decrease in blood pressure.

• Your body may form inhibitors to Factor VIII. An inhibitor is a part of the body’s defense system. If you form inhibitors, it may stop this medicine from working properly. Your healthcare provider may need to test your blood for inhibitors from time to time.

• Common side effects are dizziness and allergic reactions. • These are not the only side effects possible. Tell your healthcare provider about any

side effect that bothers you or does not go away.

What else should I know about AFSTYLA?

• Medicines are sometimes prescribed for purposes other than those listed here. Do not use this medicine for a condition for which it is not prescribed. Do not share with other people, even if they have the same symptoms that you have.

Please see full prescribing information, including full FDA-approved patient labeling. For more information, visit www. AFSTYLA.com

Manufactured by:CSL Behring GmbH35041 Marburg, Germany

for:CSL Behring Recombinant Facility AGBern 22, Switzerland 3000US License No. 2009

Distributed by:CSL Behring LLCKankakee, IL 60901 USA

Now you can stay connected and put helpful tools right where you need them: in the palm of your hand. Baxalta, now a part of Shire, recognizes the importance of digital tools and social media in the lives of patients.

Connect with the communityBaxalta engages with the bleeding

disorders community on Facebook, YouTube and Instagram. Each social media channel fosters awareness and promotes making connections with the community. Instagram’s @BleedingDis-ordersCommunity, for instance, offers up-to-the-moment content for the com-munity, like what’s happening at NHF.

Find live events in your areaSocial media is just one component

Exhibitor News features items provided by exhibitors at the NHF Annual Meeting who are also advertising in this publication. The content of these items, as well as the content of their ads, is the sole responsibility of the advertisers. National Hemophilia Foundation and CustomNEWS, Inc., are not responsible for this content.

of Baxalta’s outreach efforts. Its website, www.baxaltahematology.com, gives you easy access to live educational program-ming in your area, as well as other resourc-es. HELLO TALK programs put you in touch with subject matter experts through live interactive educational sessions. HELLO TOOLS materials offer education and life resources to help you manage your bleeding disorder.

Stay in control with the BEAT BLEEDS App

BEAT BLEEDS is Baxalta’s smart phone application available for Andriod and iPhone. This app for busy lives helps you take charge of your bleeding disorder by setting infusion reminders, tracking progress, setting your annual bleed rate (ABR) goal and sharing your information

at the touch of a button. BEAT BLEEDS App is designed to help you understand each bleed. Download it today from Apple’s APP STORE and GOOGLE PLAY today!

To learn more about Baxalta and its

offerings, visit Baxalta’s hematology website. Make sure you also stay in the loop and check out the NHF’s 68th An-nual Meeting schedule for upcoming edu-cational sessions. (USBS/MG1/16-0525)

Learn about Congenital Hemophilia With inhibitors

Join us at the Baxalta Booth #307 on Thursday, July 21st at 8:15pm!

Meet real people living with inhibitors and discover their stories of being their best selves every day. Living with inhibi-tors takes resilience. Courage. Inspiration.

Baxalta, now part of Shire, is dedicated

to supporting you. We are proud to bring you programs that help you connect and find encouragement.

Join us at the Inhibitor Suite on Sat-urday, July 23rd from 10am-2pm in the Emerald 8 Room!

You are all winners and you have earned your moment to shine – to rec-ognize each victory with a team that supports you. So let’s come together as a community and celebrate!

• Learn how to be active, stay hy-drated and gear up for family fun!

• Have your picture drawn by a caricature artist

• Be active with basketball and safe archery

• See yourself on a magazine cover at a fun photo experience

Please see our ad on page 11. (USBS/MG1/16-0531(1))

Baxalta, Now Part of shire: Powered by Our Commitment to You

Baxalta, now a part of Shire, is built on strength and experience, and is pow-ered by an enduring commitment to you. Each company brings world-class prod-ucts as well as a foundation for sustained category leadership in rare diseases.

Combining 60 years with 30 years of dedicated history to bleeding and rare disorders communities, the new company has even more resources to offer. What that means for patients is that Baxalta is maintaining its solid commitment to you while still offering innovative products. Introducing treatments for bleeding dis-orders, and making a meaningful differ-ence in the lives of patients and families continues to be Baxalta’s main focus.

Shire’s combined product offerings have expanded the range of therapeutic areas. Shire and Baxalta are combining 60 years with 30 years of dedicated his-tory to the hemophilia and rare disorders communities.

To learn more, stop by the Baxalta booth at this year’s Annual Meeting. (USBS/MG1/16-0527)

NHF Daily is published by the National Hemophilia Foundation in conjunction

with the 68th Annual Meeting in Orlando, Florida.

Keep in Touch, stay in Control With Baxalta’s digital Tools, social Channels and Website

http://www.baxaltahematology.com



https://events.hemophilia.org/ehome/index.php?eventid=148171&

https://events.hemophilia.org/ehome/index.php?eventid=148171&


EXHIBIT FLOOR PLAN

Exhibiting Company ......................................................Booth #Accredo ......................................................................................705Affinity Biotech .........................................................................619AllCare Plus Pharmacy ..........................................................1025The Alliance Pharmacy .............................................................718Alnylam Pharmaceuticals ........................................................605Baxalta, now part of Shire ........................................................307Bayer ..........................................................................................808Bio Products Laboratory USA Inc. ...........................................700Biogen ........................................................................................509BioScrip, Inc. .............................................................................100BriovaRx ....................................................................................621Brothers Specialty RX .............................................................. 401The Coalition for Hemophilia B ...............................................913Cottrill’s Specialty Pharmacy ...................................................722CSL Behring .................................................................801 & 1008CVS Health ................................................................................301Diplomat ....................................................................................403Emergent BioSolutions .............................................................216Factor Support Network Pharmacy ..........................................502FDA/Center for Biologics Evaluation and Research ...............102Florida Hemophilia Association .............................................1017Galen US Inc. ..........................................................................1005Genentech ..................................................................................319Grifols USA, LLC ...................................................................... 111HEMA Biologics ..................................................................LoungeHemophilia Alliance ..................................................................720Hemophilia Federation of America (HFA) .............................1021Hemophilia Foundation of Greater Florida ...........................1019HIV Story Project & The National AIDS Memorial Grove .........................................................1013Hope for Hemophilia .................................................................104Matrix Health Group ................................................................ 411My Life, Our Future ................................................................ 1007National Cornerstone Healthcare Services .............................222

National Hemophilia Foundation ............................................ 501Novo Nordisk .............................................................................101Octapharma ...............................................................................519Option Care ...............................................................................601Patient Services, Inc. ................................................................407Pfizer, Inc. ...................................................................................609Plasma Protein Therapeutics Association (PPTA) ..................106Rare Patient Voice .....................................................................909Soleo Health ..............................................................................704Specialty Therapeutic Care ....................................................... 911St. Jude Children’s Research Hospital .................................... 623uniQure ......................................................................................702World Federation of Hemophilia ..............................................603 —Exhibit List as of July 12, 2016

Play the App game, Win PrizesAnnual Meeting attendees who download the Annual

Meeting app can participate in “Brighter Future Together,” an in-app game. Visit participating exhibi-

tor booths to snap a selfie. Each picture is worth a certain number of points. When you accumulate enough points, you will be entered into a drawing to win prizes. Winners will be announced on Saturday, July 23, at the NHF Official An-nual Meeting and Awards Ceremony. You must be present to claim your prize. Some restrictions apply.

App game participating booths: Baxalta, now part of Shire, Bayer, Biogen, Grifols, NHF, Novo Nordisk, Octapharma and Pfizer


NHF ANNUAL MEETING Adult Men Chapters En Español Families/All Spouse & Partners Teen and Young Adults Von Willebrand Disease Women with Bleeding Disorders Plenary/Industry Symposia

------

NHF Staff Lounge NHF Staff Office & Storage Speaker ready room

gaylord Palms Convention Area — Color Key to Meeting rooms

gaylord Palms resort Floor Plan

There’s more to having a bleeding disorder or raising a child with one than the physical needs.

There are also financial needs that need to be factored in. NHF is fortu-nate to have Gordon F. Homes, Jr., CLU, ChFC, CLTC, CFP, a certified financial planner with MetLife in Indianapolis, as one of our present-ers. Among his specialties are senior financial planning and special needs financial planning.

If you’re facing the golden years,

you’ll want to attend the Thurs-day afternoon session, Creating a Retirement Plan. During the hour-long period, Homes will pro-vide information on the “catch-up” provision of the tax code, such as contributions to 401(k) accounts. He will also discuss long-term care insurance. Both of these top-ics will be addressed in regard to the specific needs of people with bleeding disorders.

Later Thursday afternoon, Homes

Financial Planning for Kids, seniorswill be the speaker for Protecting Your Child’s Financial Future. This practical workshop will address the issues family members deal with in planning for the financial needs of a child with special needs. Come find out about special needs trusts, how to gain guardianship and when a will should be established. Fur-ther, you will be enlightened on such government-sponsored programs as Medicaid, supplemental security in-come (SSI) and Social Security Dis-

ability Insurance (SSDI). Find out about state’s provisions for the new tax-free Achieving a Better Life Ex-perience (ABLE) savings accounts for children with special needs.

CREaTINg a RETIREmENT plaNThursday, 1:15pm-2:15pmOsceola 4 pROTECTINg YOuR ChIlD’S FINaNCIal FuTuREThursday, 4:00pm-5:00pmTampa

Built on strength and experience. Powered by our commitment to you.We believe the relationship between Shire and Baxalta and our commitment to the communities we serve is a powerful combination.

Combining 60 years with 30 years of dedicated history to the Hemophilia and rare disorders communities, we have even more resources to leverage. And, we’ll continue to consistently pursue advancements in the treatment of bleeding disorders.

You can count on us because we’re here … stronger than ever.

Shire and Baxalta are trademarks of Shire PLC., its subsidiaries or affiliates.June 2016 USBS/MG1/16-0480

6

IMPACT

Unless otherwise noted, Baxalta US Inc., the sponsor or holder of this meeting/event, is solely responsible for its content, including any information presented or distributed during the meeting/event.

Shire and Baxalta are trademarks of Shire plc, its subsidiaries or affiliates.June 2016 USBS/MG1/16-0207(1)

Visit BaxaltaImpactAwards.com for details. #ImpactAwards2016

Baxalta has teamed up with Patrick James Lynch and The Stop the Bleeding Team to bring you The Impact Awards! The Awards recognize young people with bleeding disorders whose actions positively impact the world around them.

THURSDAY, JULY 21GAYLORD PALMS RESORT & CONVENTION CENTERDoors Open at 8:00pm

Imagine. Inspire. Impact.Join us for an unforgettable evening at the second annual Impact Awards!

NHF 68th Annual Meeting Orlando, Florida • …...2016 ANNUAL MeeTiNg PreVieW — OrLANdO, FLOridA 3 N HF hopes that your first Annual Meeting experi - ence is so wonderful that you

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