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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
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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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 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
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Alpha-1 Global can give you advise !