Maximise Your Patient Organisation’s Impact - Alpha-1 Globalalpha-1global.org/wp-content/uploads/2017/04/WILLERSINN.pdf · Baxter . RDI Rare Disease International . CSL Behring

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Maximise Your Patient Organisation’s Impact

Frank Willersinn

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Get your leaflet printed

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Get your message

Choose our priority

awareness of the disease detection of patients

access to care for Alphas

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Running established Patient Organisations

How to get new members? How to find volonteers ? How to find leaders? Where to find funding?

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1. level: the patient as individual .

Alpha-1 communication physiotherapy group Lung/Liver doctor patient with patients family

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2. level: the association

Alpha-1 P.O.

P.O. Alpha-specialists in clinics Ministery of Health PHARMA P.O. Rare diseases Rare diseases Baxter

P.O. Hemophilia Docters associations Lung CSL Behring

P.O. Immunodeficiency Liver Kamada National Alpha Registry institutions Grifols

P.O. COPD L.F.B. P.O. sarcoidosis Politicians Pulmonx

P.O. tuberculosis Members of Parliament Linde

Oxygen association

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3.level: european / international / global

Alpha-1 Foundation W.H.C. ORPHANET p.ex.

European parliament

PHARMA Alpha-1 Global I.P.O.P.I. EURORDIS Baxter

RDI Rare Disease

International CSL Behring ERS / ELF Kamada Grifols

other National P.O. L.F.B. Pulmonx Linde

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3.level: european / international / global

Alpha-1 Foundation W.H.C. ORPHANET p.ex.

European parliament

PHARMA Alpha-1 Global I.P.O.P.I. EURORDIS Baxter

RDI Rare Disease

International CSL Behring ERS / ELF Kamada Grifols

other National P.O. L.F.B. Pulmonx Linde

2. level: the association

Alpha-1 P.O.

P.O. Alpha-specialists in clinics Ministery of Health PHARMA P.O. Rare diseases Rare diseases Baxter

P.O. Hemophilia Docters associations Lung CSL Behring

P.O. Immunodeficiency Liver Kamada National Alpha Registry institutions Grifols

P.O. COPD L.F.B. P.O. sarcoidosis Politicians Pulmonx

P.O. tuberculosis Members of Parliament Linde

Oxygen association

1. level: the patient as individual .

Alpha-1 communication physiotherapy group Lung/Liver doctor patient with patients family

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In Europe ORPHANET EURORDIS the patient’s voice of Rare diseases ERN European Reference Networks COPD chronic obstructif pulmonary disease EUPATI European Patient Academy for Innovative Medicine - PLUS Plasma user group - IPOPI International patient Organization of Primary Immunodeficiency - EHC European Hemophilia Consortium - ELF European Lung Foundation - EPF European Patient Forum

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ORPHANET The portal for rare diseases and orphan drugs

"Rare diseases are rare, but rare disease patients are numerous"

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EUPATI is a network of European National Platforms. Autriche France Allemagne Irlande Italie Luxembourg Malte Pologne Espagne Suisse Royaume-Uni Romania

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European networks of reference for rare diseases

Background

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European Reference Networks (ERNs) created on founding principles of patient-centred care, patient advocate empowerment, patient engagement

European Patient Advisory Groups (ePAG): • Forum for dialogue, unity & solidarity to optimise involvement of

patients • Representativeness to engage into application and governance

of rare diseases ERNs • Open to members & non-member patient groups in EU • Aligned with RD ERN scope • Composed of elected ePAG representatives & member

organisations

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ERN LUNG ePAG

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Alpha 1 Deutschland eV GERMANY Alpha 1 Netzwerk eV GERMANY ALPHA 1 WORKING GROUP Netherlands

Alpha Europe Federation [AEF] SPAIN ALPHA ONE FOUNDATION Ireland Alpha-1 Plus asbl BELGIUM Amici Contro la Sarcoidosi Italia ONLUS [ACSI] ITALY ASOCIACIÓN ANDALUZA CONTRA LA FIBROSIS QUÍSTICA [AACFQ]

Spain

Asociacion de Familiares y Enfermos de FPI y FPF [AFEFPI]

SPAIN

ASOCIACIÓN ESPAÑOLA DE LINFANGIOLEIOMIOMATOSIS [AELAM]

Spain

ASOCIACIÓN NACIONAL DE HIPERTENSIÓN PULMONAR [ANHP]

Spain

ASSOCIAÇAO NACIONAL DE FIBROSE QUISTICA [ANFQ]

PORTUGAL

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Helping empower patients and patient organisations benefits not only their own wellbeing but has been shown to improve the wellbeing of the community as a whole. Through our educational seminars, policy initiatives and projects, we help support their work and mission through capacity building initiatives and exchange of best practices and information.

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AUSTRALIA Lung Foundation Australia Murdoch Children’s Research Institute St.Vincent’s Hospital Melbourne

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SOUTH AMERICA Fund EPOC (Argentina) Asociación Latino Americana de Tórax (ALAT) Rare Diseases Networks

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UNITED STATES American Thoracic Society NORD National Organization for Rare Disorders COPD Foundation AAFA AAF

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Get in trials

https://clinicaltrials.gov/

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…still time to write down the hours you spend in your volounteer comittement ?

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Get your key point message Get your media supports Get your taxe exoneration for financial support & sponsorship Get linked to National and International Associations

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Get your key point message Get your media supports Get your taxe exoneration for financial support & sponsorship Get linked to other National and International Associations

GET INTERCONNECTED by Networking

Alpha-1 Global can give you advise !

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Thank you for your attention !