AFM-Telethon puts the power of patients at the core of its international activities, with the aim of strengthening the place of French neuromuscular patients in Europe and in the world.
This results in, inter alia:
- The participation of patient representatives from the Association to international federations of patient associations,
- An active participation to the ERN Euro-NMD, the European reference network on rare neuromuscular diseases,
- The support to ENMC activities, a patient-led organization favoring collaborations between clinicians, researchers, and patients,
- Collaborations with foreign patient associations,
- The participation of patient representatives from the Association to international scientific consortium,
- The contribution of patient representatives from the Association before European regulatory bodies and pharmaceutical companies.
Participation to international federations of patient associations
AFM-Telethon is an active member of several European and International federations bringing together national patient associations:
• World Duchenne Organization (WDO),
• SMA Europe, of which AFM-Telethon is a founding member,
• FSHD Europe,
• Euro-DyMA, of which AFM-Telethon is a founding member,
• LGMD Consortium…
AFM-Telethon’s participation to this federations includes but is not limited to supporting activities aiming at accelerating research and development of treatment for neuromuscular diseases. It may include, but not exclusively, collecting patients’ perspective and priorities through dedicated surveys or managing co-funded call for research projects.
Creation of the European collective Eurordis
AFM-Telethon was also behind the creation in 1997 of the European collective Eurordis, the voice of rare disease patients in Europe and worldwide. The Telethon’s funding guarantees the structure's operation and independence. Today Eurordis is an alliance of 1000 national patient organizations from 74 countries. Its role was decisive in obtaining European legislation favorable to the development of drugs for rare diseases through adoption of the Orphan Drug Act in Europe in 1997. Eurordis promotes implementation of national policies dedicated to research and development of treatments for rare diseases and advocates for equitable access to these treatments.
Discover more: Eurordis
Participation to Euro-NMD, the European reference network on rare neuromuscular diseases
AFM-Telethon is actively involved in the activities of Euro-NMD, the European reference network on rare neuromuscular diseases. This network brings together 84 health care providers in Europe, spread across 25 countries, including 10 in France. Its objectives are diagnosis, training, publication of recommendations, development of translational research and establishment of protocols.
Several patient representatives from the Association take part in Euro-NMD working groups. The Patient Advisory Board, responsible for coordinating patient activities withing the network and participating in its governance, is chaired by a patient representative from AFM-Telethon.
Discover more: Euro-NMD
Support to ENMC activities
Founded in 1992 by eight European patient organizations including AFM-Telethon, the European NeuroMuscular Center aims to bring leading clinicians, researchers, and patient representatives together. The mission of ENMC is to encourage and facilitate communication and collaboration in the field of neuromuscular research with the aim to improve diagnosis, find effective treatments and optimize standards of care. AFM-Telethon is a member of the ENMC Executive Committee.
Discover more: ENMC
Collaborations with foreign patient associations
Incidentally, AFM-Telethon also supports patient associations contributing to improve medical care for patients abroad: Tierno and Mariam’s International Foundation (FITIMA) in Burkina Faso and Guinea, the West African reference network for muscular dystrophies (ROAMY) and ALAN Maladies Rares in Luxembourg.
Other international collaborations
AFM-Telethon also voices patient concerns before international scientific consortium, regulatory bodies, and pharmaceutical companies, promoting the original model of a patient association investing in research and the development of therapies. This includes the active participation of AFM-Telethon Expert patients in standards of care definition taskforces (Treat-NMD and Euro-NMD ERN), clinical advisory boards, multistakeholders workshops also including clinicians and researchers (ENMC) and international research consortiums (IRDiRC, EJP-RD, Treat-NMD).