Frank Willersinn. Maximise Your Patient Organisation s Impact

Transcription

1 Frank Willersinn Maximise Your Patient Organisation s Impact 1

2 Get your leaflet printed 2

3 Get your message Choose our priority awareness of the disease detection of patients access to care for Alphas 3

4 Running established Patient Organisations How to get new members? How to find volonteers? How to find leaders? Where to find funding? 4

5 . 1. level: the patient as individual Alpha-1 communication physiotherapy group Lung/Liver doctor patient with patients family 5

6 2. level: the association 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 Alpha-1 P.O. 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 6

7 3.level: european / international / global Alpha-1 Foundation W.H.C. ORPHANET PHARMA Alpha-1 Global I.P.O.P.I. EURORDIS p.ex. Baxter RDI Rare Disease International European parliament CSL Behring ERS / ELF Kamada Grifols other National P.O. L.F.B. Pulmonx Linde 7

8 3.level: european / international / global Alpha-1 Foundation W.H.C. ORPHANET PHARMA Alpha-1 Global I.P.O.P.I. EURORDIS p.ex. Baxter RDI Rare Disease International European parliament CSL Behring ERS / ELF Kamada Grifols other National P.O. L.F.B. Pulmonx Linde 2. level: the association 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 Alpha-1 P.O. 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 8

9 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 9

10 ORPHANET The portal for rare diseases and orphan drugs "Rare diseases are rare, but rare disease patients are numerous" 10

11 EUPATI is a network of European National Platforms. Autriche France Allemagne Irlande Italie Luxembourg Malte Pologne Espagne Suisse Royaume-Uni Romania 11

12 European networks of reference for rare diseases 12

13 Background 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 21/04/

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15 ERN LUNG epag 15

16 Alpha 1 Deutschland ev Alpha 1 Netzwerk ev ALPHA 1 WORKING GROUP GERMANY GERMANY Netherlands Alpha Europe Federation [AEF] ALPHA ONE FOUNDATION Alpha-1 Plus asbl Amici Contro la Sarcoidosi Italia ONLUS [ACSI] ASOCIACIÓN ANDALUZA CONTRA LA FIBROSIS QUÍSTICA [AACFQ] Asociacion de Familiares y Enfermos de FPI y FPF [AFEFPI] ASOCIACIÓN ESPAÑOLA DE LINFANGIOLEIOMIOMATOSIS [AELAM] ASOCIACIÓN NACIONAL DE HIPERTENSIÓN PULMONAR [ANHP] ASSOCIAÇAO NACIONAL DE FIBROSE QUISTICA [ANFQ] SPAIN Ireland BELGIUM ITALY Spain SPAIN Spain Spain PORTUGAL 16

17 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. 17

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19 AUSTRALIA Lung Foundation Australia Murdoch Children s Research Institute St.Vincent s Hospital Melbourne 19

20 SOUTH AMERICA Fund EPOC (Argentina) Asociación Latino Americana de Tórax (ALAT) Rare Diseases Networks 20

21 UNITED STATES American Thoracic Society NORD National Organization for Rare Disorders COPD Foundation AAFA AAF 21

22 Get in trials 22

23 still time to write down the hours you spend in your volounteer comittement? 23

24 Get your key point message Get your media supports Get your taxe exoneration for financial support & sponsorship Get linked to National and International Associations 24

25 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! 25

26 Thank you for your attention! 26