European Patient Organisation for Dysimmune and Inflammatory Neuropathies
Budget
€184,000
EP Access
2
accredited persons
Staff
6
3 FTE
EU Grants
None
Mission & 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 (...)
EU Legislative Interests
Blood directive, orphan medicinal product, advanced therapeutic medicinal products, crossborder healthcare directive, rare diseases, equal access to care, research and innovation, patient registries. Critical Medicine Alliance Act - Biotech Act - Pack Pharmacy- Regulation on HTA EU Pharmaceutical Legislation Reform (incl. orphan & paediatric medicines) European Rare Disease Action Plan (under development) Horizon Europe 2026–2027 Work Programme (Health Cluster) EU4Health Work Programme 2026 European Health Data Space (EHDS) Implementation Acts Health Technology Assessment Regulation (EU) 2021/2282 (joint clinical assessments) European Reference Networks (ERNs) governance & calls Directive 2011/24/EU on Cross-Border Healthcare (national implementation) Council Conclusions on Rare Diseases (updates & follow-up) European Parliament own-initiative reports on Rare & Neurological Diseases
Communication Activities
Strategic advocacy at European and national levels, shaping policy discussions on Dysimmune Inflammatory Neuropathies (DINs) through the development of evidence-based position papers and targeted engagement with Members of the European Parliament, European Commission officials, and other key decision-makers. Driving policy recognition and public awareness of DINs, notably through the launch and institutionalisation of DIN Day in 2022, mobilising stakeholders, strengthening the patient voice, and positioning DINs higher on the EU health policy agenda.
Interests Represented
Does not represent commercial interests
Member Of
Member of EURORDIS Member of the European network EURO-NMD Member of EFNA
Organisation Members
NATIONAL PATIENT ORGANISATIONS AFNP : France CIDP ONLUS : Italy GBS CIDP Selbsthilfe e.V. : Germany ARBNP : Romania Neuropatias Autoinmunes- GBS-CIDP: Spain APN: Portugal GBS-CIDP Patientforening: Denmark GBS-CIDP Initiative: Switzerland Gain Charity : UK AxON : Poland
Additional Information
EPODIN is a 100% national patient organizations which aims to be the voice of people living with dysimmune and inflammatory neuropathies (DIN) - Rare disorders Members EPODIN organization are patient associations based in several European countries (France, Germany, Italy, Spain, Romania, United Kingdom, Switzerland, Denmark, Portugal, Poland ).
Commissioner Meetings
No recorded meetings with EU commissioners.