European Patient Organisation for Dysimmune and Inflammatory Neuropathies
Acronym: EPODIN
General Information
Identification Code: 551594935772-82
Website: [object Object]
Entity Form: NGO
Registration Category: Non-governmental organisations, platforms and networks and similar
Registration Date: 9/2/2019
Last Update: 2/10/2024
EP Accredited Number: 0
Mission & Interests
Goals: EPODIN’s contribution aims, by mobilizing and strengthening the patient’s voice, to give each European citizen living with a rare immune-mediated peripheral neuropathy the opportunity to reduce the burden and inequalities due to the disease.
EPODIN´s main objectives are to:
a) Be the voice of patients living with rare immune-mediated peripheral neuropathies at a European level,
b) Work with all European regular patients' organizations to ensure that all patients in all European countries living with rare immune-mediated peripheral neuropathies can have a voice to improve living with the disease,
c) Achieve the highest standards of diagnosis, treatment and care for rare immune-mediated peripheral neuropathic patients in each European country,
d) Raise public awareness of immune-mediated neuropathies,
e) Promote measures to research in the field of rare immune-mediated peripheral neuropathies and related issues,
f) Collaborate with European health institutions and all me (...)
Interests Represented: Does not represent commercial interests
Interests:
- Employment and social affairs
- Public health
- Regional policy
- Research and innovation
- Trans-European Networks
Levels of Interest:
- european
Activities
Main EU Legislative Proposals: Blood directive, orphan medicinal product, advanced therapeutic medicinal products, crossborder healthcare directive, rare diseases, equal access to care, research and innovation, patient registries.
Communication Activities: Advocacy campaigns at European and national level, position papers on relevant EU policy initiatives, contact with Members of the European Parliament, European Commission officials.
Raising awareness about Dysimmune Inflammatory Neuropathies (DINs) / Creation of the DIN DAY (mainly virtual event)
Inter-institutional or Unofficial Groupings: Disability
Head Office
Address: 7 Rue du Centre
Post Code: 44510
City: LE POULIGUEN
Country: FRANCE
Phone: [object Object]
EU Office
Address: 7 Rue du Centre
Post Code: 44510
City: LE POULIGUEN
Country: FRANCE
Phone: [object Object]
Financial Data
New Organisation: false
Closed Year: [object Object]
Current Year: [object Object]
Complementary Information: EPODIN is a rather young organisation and a 100% patient organization which aims to be the voice of people living with rare disorders (dysimmune and inflammatory neuropathies - DINs-)
Until now members of the EPODIN organization are patient associations based in several European countries (in 2024, France, Germany, Italy, Spain, Romania, United Kingdom). Until 2023, EPODIN operated on the basis of annual membership fees (100€ per year). For the implementation of several projects (e.g. website, creation of a DIN Day, advocacy), associations that were able to do so supported the projects for free.
For 2024, EPODIN budget will evolve considerably and we will be seeking financial support to meet our needs, objectives and have our own budget.
Membership Information
Members10 Percent: 0
Members25 Percent: 0
Members50 Percent: 6
Members75 Percent: 0
Members: 6
Members F T E: 3
Info Members: All members are volunteers from other several national organisations.
It is very difficult to measure the % of working.
Structure
Structure Type: Structure
Is Member Of: AFNP : France
CIDP ONLUS : Italy
GBS CIDP Selbsthilfe e.V. : Germany
ARBNP : Romania
GBS-CIDP Spain
Gain Charity -UK
Organisation Members: Member of EURORDIS
Member of the European network EURO-NMD
Member of EFNA