About EPODIN
EPODIN is a European Non-Governmental and non-profit organization
ID number in the EU Transparency Register : 551594935772-82
EPODIN IS HEADQUATERED AND REGISTERED in
7, rue du Centre
F-44510 LE POULIGUEN
FRANCE
Registration number: W443009472
Correspondance address is 34 avenue des Champs Elysées 75008 PARIS – France
MEMBER ASSOCIATIONS
EPODIN is composed of the following entities representing their national organisation
AFNP France – Association Française contre les Neuropathies Périphériques
Jean-Philippe Plançon (Chair)
CIDP ONLUS Italy
Massimo Marra / Patrizia Garzena
ARBNP Romania
Daniela Mitcov
GBS-CIDP Spain
Alejandra Perez del Real
GAIN Charity UK – Guillain-Barré & Associated Inflammatory Neuropathies
Caroline Morrice
BOARD OF DIRECTORS
STATUTES
MISSIONS OF EPODIN
Considering
that “a high level of human health protection shall be ensured in the definition and implementation of all European Union policies and activities” (Public health- TFUE Art.168),
the protection of health as a fundamental human right, an essential condition for social cohesion and economic stability,
that all lives have the same value whatever your living country,
that all patients living with rare immune-mediated peripheral neuropathies conditions in Europe should have access to high-quality, patient-centred health and related care,
EPODIN’s contribution aim by mobilizing and strengthen the patient’s voice to give each European citizen living with a rare immune-mediated peripheral neuropathy the opportunity toreduce the burden and inequities due to the disease.
EPODIN shall defend the interests of its own members and of the members of the latter on the European and if necessary on world scene.
OBJECTIVES
EPODIN strives for a close collaboration between its members, European institutions and organizations. By connecting them and mobilising the rare immune-mediated peripheral neuropathies community, EPODIN aim to strengthens patient’s voice, shapes research, policies and services for patients and their families.
EPODIN´s main objectives are to:
Be the voice of patients living with rare immune-mediated peripheral neuropathies at the European level,
Work with all European regular patient’s organizations to ensure that all patients in all European countries living with rare immune-mediated peripheral neuropathies can have a voice to improve their lives with the disease,
Achieve the highest standards of diagnosis, treatment and care for rare immune-mediated peripheral neuropathiespatients in each European country,
Raise public awareness of immune-mediated neuropathies,
Promote measures to research in the field of rare immune-mediated peripheral neuropathies and related issues,
Collaborate with health European institutions (including European Reference Networks) and all medical societies to improve global health standards and specific health standards in the field of immune-mediated neuropathies, including the question of international guidelines in each rare immune-mediated peripheral neuropathy,
Advocate on behalf of national associations to improve their policies on social and health standards for Immune-mediated neuropathies patients on a national and international level,
Promote the exchange of information between members,
Promote and encourage the creation and management of a collective online platform with the ambition to make a difference for immune-mediated peripheral neuropathies patients and their families in the entire Europe,
Advocate to help the improvement of health standards, social & medical policies both at national and international levels,
Support countries in initiating patient groups,
Advocate on the question of therapeutic access for immune-mediated neuropathies, especially in the field of plasma therapeutic protein; specific pain treatment; biosimilar immunosuppressive treatment;well-established therapeutic procedure such as plasma exchange and more widely for an access to all other relevant treatments attached to scientific studies.