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.