^ fiCT€LION List of patient groups 2012 Country Patient Associations Support from Affiliates HQ Allschwil Pulmonary Hypertension Association Europe (PHA EUROPE) Grant of 150'000 CHF for dissemination ofthe report ("The impact of pulmonary arterial hypertension (PAH) on the lives of patients and carers: resuits from an international survey") among and by member associations European Gaucher Alliance 10 000 EUR grant for EGA work programme and activities for 2012 European Gaucher Alliance 10 000 GBP grant for EGA work programme and activities for 2013
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^ fiCT€LION
List of patient groups 2012
Country Patient Associations Support from Affiliates
HQ
A
llsch
wil
Pulmonary Hypertension Association Europe (PHA EUROPE) Grant of 150'000 CHF for dissemination ofthe report ("The impact of pulmonary arterial hypertension (PAH) on the lives of patients and carers: resuits from an international survey") among and by member associations
European Gaucher Alliance 10 000 EUR grant for EGA work programme and activities for 2012
European Gaucher Alliance 10 000 GBP grant for EGA work programme and activities for 2013
a X
Isch
wil
UK Niemann Pick Disease Group 10 000 GBP grant for 3rd Interactive Workshop on Niemann Pick Diseases, Sep 21, 2012
< Niemann-Pick Selbsthilfegruppe e.V
For the US: The National Multiple Sclerosis Society
1 000 EUR unrestricted grant
Sponsorship for USD 10,000 as part of their Bike MS City to Shore challenge
Au
stri
a
Austrian PAH Association 33 965.91 EUR: support for specific projects: patient meetings + travel costs, office support, transfer public campaign www.ichlauffuerdich.at
Austrian Association for children with congenital heart failure 7 715 EUR: 20 Years celebration
Morbus Gaucher Austria 3 000 EUR: annual patient association meeting support
Austrian patients associations for Scleroderma and Rheumatology
5 864.32 EUR: support for meetings of the self-help groups 2012 (meetings and travel costs)
CF Austria 1 000 EUR: support grant for the education day pulmonology 2012 (organizer: clinic Wels-Grieskirchen)
um
No financial support provided for 2012
Bel
gi
(0 Unrestricted Educational T3 CORD - Canadian Organization for Rare Disorders Unrestricted Educational
(Q CORD - Canadian Organization for Rare Disorders
Grant to all PAs
C Regroupement Quebecois pour les maladies orphelines -CO RQMO
O Canadian chapter ofthe National Niemann Pick Disease Association
National Gaucher Foundation
Eczema Society of Canada
Pulmonary Hypertension Association of Canada
Sclerodermie Quebec / Canada
Canadian Adult Congenital Heart Network
Fondation en Coeur
o o N O Q.
"Sdruzeni pacientu s plicni hypertenzi" The Civic association of patients with pulmonary hypertension
Research and Educational Grant: 300 000-CZK
o c (0
Association des Sclerodermiques de France (ASF) (French Scleroderma Association)
HTAP France (French PAH Association)
Association Nationale des Cardiaques Congenitaux (ANCC)
Vaincre les maladies Lysosomales (VML)
15 000 EUR to support the publication of a press release and implementation of training
40 000 EUR to fund research in PAH and to inform patients and their families
20 000 EUR for financial support to local meetings for patients and for the internal organization ofthe association and to create a booklet in adult congenital heart diseases
15 000 EUR for financial support to develop support services for parents of sick children
iiia
ny
Herzklopfen e.V.
Lebenshilfe Giessen
500 EUR: donation
1 100 EUR : donation
Ger
Niemann-Pick Selbshilfegruppe e.V. 15 000 EUR : donation
Ger
Pulmonale hypertonie (ph) e.V. 17 500 EUR:
Supporting membership Sponsorship
Bundesvereinigung JEMAH e.V. 744 EUR : donation
Euscle e.V. 7 500 EUR: donation
FEA GmbH 1 000 EUR: donation
GGD 12 000 EUR: donation
Kinderherzen Retten 10 000 EUR: donation
NEMO e.V. 4 000 EUR: donation
Offene Fachschaft Medizin Freiburg 1 500 EUR: donation
PAH Europe 1 000 EUR: donation
Sklerodermie Selbsthilfe 1 000 EUR: donation
0) o The Greek Alliance of Rare diseases 2 500 EUR : support
educational meetings & disease awareness
5 campaign
£̂ Tudoer Egylet - National Pulnnonary Vasculature Patient 1 500.000 HUF: financial Association with its registered seat in Hungary, Chazar Andras support for the functioning of u. 19/B, Budapest, 1146 the organizations
c Tax Number: 18197048 - 1 - 4 2
X Scleroderma Egyesulet 500.000 HUF : financial support for the functioning of the organizations
Veleszuletett Szivbetegek kozhasznu Egyesulete 500.000 HUF: financial Veleszuletett Szivbetegek kozhasznu Egyesulete support for the functioning of the organizations
Ital
y
All mentioned patient associations received an economic support according their own statute (filed at Italian Affiliate HQs) for what concerns the rational donation
Associazione Italiana Niemann pick ONLUS Via Cafasse 28 10074 Lanzo Torinese
75 000 EUR
Gruppo Italiano per la lotta alia Sclerodermia GILS ONLUS Via F. Sforza 35 20122 Milano
7 000 EUR
Associazione Lotta alia Trombosi ALT ONLUS Via Ludovico da Viadana 5 20122 Milano
40 000 EUR
Associazione Italiana dei Cardiopatici Congeniti Aduiti AlCCA ONLUS Via Pascoli 37 20097 San Donato Milanese
7 500 EUR
Associazione Italiana Lotta Sclerodermia AILS ONLUS Via Pini, 9 20122 Milano
40 000 EUR
iiciiy
Lega Italiana Sclerosi Sistemica Via C. Mecenate, 6 20138 Milano
7 000 EUR
Associazione Ipertensione Polmonare Italiana ONLUS Via G. Vigoni, 13 20122 Milano
25 000 EUR
Associazione Italiana Pneumologi Ospedalieri AlPO Via D. Da Recanate,2 20124 Milano
30 000 EUR
Associazione per il Centro di Fisiologia Ciinica e Ipertensione Via F.Sforza,35 20122 Milano
8 000 EUR
Associazione A.S.I.0.1 ONLUS Piazzale L. A. Scuro, 10 37134 Verona
2 500 EUR
Associazione Anziani ma sempre giovani Via San Cristoforo, 7 90046 Monreale
5 000 EUR
AssociazioneToscana Malati Reumatici - Grosseto A.T.Ma.R Via Etiopia, 44 58100 Grosseto
10 000 EUR
iiaiy
Associazione Italiana Ulcere Cutanee Onlus Via Assietta, 14 10128 Torino
5 000 EUR
Associazione Abruzzese Malati Reumatici "M. Alberti" A.A.Ma.R Onlus Via Fonte Romana, 8 65125 Pescara
5 000 EUR
Associazione Bresciana Artrite Reumatoide A.B.A.R Onlus Spedali Civili, 1 25123 Brescia
4 500 EUR
Associazione Lombarda Malati Reumatici ALOMAR Onlus Piazza Cardinal Ferrari, 1 20122 Milano
2 000 EUR
Associazione Malati Reumatici AMaR Umbria Onlus Via Luigi Rizzo, 23 06100 Perugia
15 000 EUR
LeLiCoMar Onlus Lega Regionale Ligure Contro la Malattie Reumatiche e per I'aiuto ai malati reumatici Via XII ottobre, 2/121 16121 Geneva
3 000 EUR
Ifa
lw
iiaiy
Associazione Italiana Gaucher Onlus Borgo SS Apostoli, 8 50123 Firenze
10 000 EUR
Associazione Cometa A.S.M.M.E. ONLUS Via Monte Sabotino, 12/A 35020 Ponte San Nicolo
5 000 EUR
Unione Italiana Lotta alia Distrofia Muscolare U.I.L.D.M. Onlus Via E. De Amicis, 116 56010 Arena Metato
7 000 EUR
ACR Onlus Fondazione "Ai Chiozzi" per la ricerca sulle malattie Reumatiche Viale Majno, 17/A 20122 Milano
30 000 EUR
Associazione Amici del Cuore Piemonte Onlus Corso Bramante, 88 10126 Torino
16 000 EUR
Children's Heart Organization Via Pascoli, 37 20097 San Donato Milanese
30 000 EUR
Societa Italiana di Cardiologia Via Po, 24 00198 Roma
15 000 EUR
Ital
y
Associazione San Luigi Gonzaga ONLUS Regione Gonzole, 10 10043 Orbassano
10 000 EUR
Associazione Amici del San Gerardo di Monza Onlus Via Donizetti, 106 20900 Monza
25 000 EUR
Associazione Persone con Malattie Reumatiche A.P.MA.R Onlus Via Miglietta, 5 73100 Lecce
6 000 EUR
Mex
ico
Asociacion Mexicana de Hipertension Arterial Pulmonar, A.C. Unrestricted grant of MXN $60,000.00 (MXN $15,000.00 per Quarter)
c iS o
Stichting PHA Nederland
Nationale Vereniging L.E. Patienten (NVLE)
Volwassenen.Kinderen en Stofwisselingsziekten (VKS)
Schichting Sclerodermie Nederland
Unrestricted financial donation : 2 500 EUR
Unrestricted financial donation : 1 500 EUR
Unrestricted financial donation : 10 000 EUR
Unrestricted financial donation : 1 000 EUR
c O o o
O
Rare Diseases Sweden
Nordic Baltic Gaucher Association
Financial support to specific events; 7 lectures in Sweden between Nov 2011 and Dec 2012; 50 000 SEK
Financial support to specific educational event: 2012; 25 000 SEK
C No financial support provided for 2012
CO
Po
:u
gal
Liga Portuguesa contra as Doengas Reumaticas (LPCDR) Sponsorship Meeting in October: 2 500 EUR
Por
t Associagao Portuguesa de Doentes com Esclerodermia (APDE)
Sponsorship registration SSc Symposium 2012: 1 000 EUR
Associagao Portuguesa de Hipertensao Pulmonar (APHP) Sponsorship National Event: 2 500 EUR
Rarissimas Annual grant to support PA yearly activity: 4 000 EUR
Associagao Portuguesa das Doengas do Lisosoma (APDL) Annual grant to support PA yearly activity: 1 000 EUR
(0 "55 National association of patients' organizations for Rare
Diseases. http://\AAAAA/. rarediseases/
All Russian Union of Orphan Diseases http://www. rarediseases. ru/
St. Petersburg Association of associations of parents of children with disabilities "GAOORDI" http://www.gaoordi.ru/
Participation in the organization of Rare Disease Day. Participation in the organization ofthe Third Russian Conference on Rare Diseases and Rarely Used Medical Technologies "Road Of life". Participation in the organization ofthe Round tables "Realization of state guarantees for patients with rare disease in the regions of the Russian Federation"
Participation in the organization of Russian Conference for Rare Diseases
Participation in the organization in the Forum. "Patients with rare diseases, and power. Effective dialogue, solidarity"
Ru
ssia
Russian Union of Patients Public Societies http://www. patients, ru/
Participation in the organization in the Third All-Russian Congress of Patient
(0 • • • • "Zdruzenie pacientov s plucnou hypertenziou o.z." Research and Educational
(0 The Civic association of patients with pulnnonary hypertension Grant :12 385,- EUR
> o "Obcianske zdruzenie Zlata rybka" Educational Grant:
CO The Civic association Goldfish 3000,- EUR
CO
Asociacion Nacional de Hipertension Pulmonar [Pulmonary Hypertension National Association^ (http://www.hipertensionpulmonar.es/) Spanish association providing support to patients affected with PH and their relatives
Fundacion Espanola de Hipertension Pulmonar Spanish association providing support to pulmonary hypertension patients and their relatives
Asociacion Espanola de Enfermos y Familiares de Gaucher (AEEFEG)
Spanish patient association of Gaucher patients
Fundacion Niemann-Pick
It inlcudes all Niemann-Pick patients and relatives (regardless of type A, B and C)
Unrestricted grants through a donation : 4 200 EUR
Unrestricted grants through a donation : 5 500 EUR
Unrestricted grants through a donation : 3 000 EUR
Unrestricted grants through a donation : 3 000 EUR
General support with c HTAP Revivre General support with
iS Association des patients Suisse Romande CHF 500.00 Hypertension pulmonaire http://\/\/ww.sgph.ch/SuisseRonnande#HTAP http://\/\/ww.sgph.ch/SuisseRonnande#HTAP
PPH Selbsthilfegruppe Schweiz General support with CHF Prinnare Pulnnonale Hypertonie 3000.00. Support of travel to
(0 Kontaktforum betroffener Patienten und interessierter patients assembly in (0 Personen Germany with CHF 1056.00 http://www.lungenhochdruck.ch/php/index.php
Elternvereinigung fur das herzkranke Kind Grant of CHF 500.00
http://www.evhk.ch/ towards the 2012 Annual http://www.evhk.ch/ conference. General support with CHF 1000.00
Organisation fur Patienten, die an Sklerodermie oder einer Grant of CHF 1000.00 verwandten Krankheit leiden. towards the 2012 Annual http://www.sclerodermie.ch conference
Pulnnonary Hypertension Association: A Support Group for PH, Scleroderma and Eisenmenger Patients NAAAAA/.phdernegi.org.tr
Based on the sponsorship frame agreement with PH Association, financial support includes unrestricted yearly educational grant, project-based support for congress participations, patient educational materials and meetings, and PAH awareness campaigns run by the association, in line with local regulations and Actelion TR PharmaCode 20.000TL
A grant of 2000 GBP Raynauds and Scleroderma Association A grant of 2000 GBP towards the 2012 Annual conference
PHA UK A grant of 7000 GBP towards the cost of the PH Professionals group business meetings, educational meetings & development of new corporate branding and website. A payment of 4247 GBP for advisory role on the GUCH project
Niemann Pick C Disease Group (NPDG UK) Funding of 20000 GBP towards the NPDG family conference. Funding of 15000 GBP towards website development costs
us
Adult Congenital Heart Association 1st Annual Bay Area Food and Wine Tasting -dedicated to improving the quality of life and extending the lives of adults with CHD
The Heart to Heart Program
2013 Congenital Heart Advocacy Day
American Lung Association in KY American Lung Association Derby Eve Gala
Congenital Heart Walk Twin Cities Congenital Heart Walk
International Scleroderma Network Web Patient Enduring Education Program for Pulmonary Arterial Hypertension (PAH) and Scleroderma
National Gaucher Foundation, Inc. Patient, Jewish population and general population education
National Organization for Rare Disorders Partners in Progress Celebration
Pulmonary Hypertension Association Thirsting For a Cure - to raise awareness in pulmonary hypertension (PH) or pulmonary arterial hypertension (PAH)
2013 PHA Charitable Programs and Services
Scleroderma Foundation 2013 Patient Support and Advocacy Programs Grant
Central Fund for Chapter/Regional Initiatives
Vera Moulton Wall Center at Stanford 12th Annual Stanford Race Against PH - 5k Run/Walk
Scleroderma Research Foundation Cool Comedy - Hot Cuisine Presenting Sponsor
Northern California Scleroderma Research Consortium
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