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Our international collaborations

Published at 23/08/2022

Innovative therapies for rare diseases are being developed internationally. Base on this observation, AFM-Telethon encourages worldwide collaboration between the most competent teams.

Encourage international collaborations

It funds teams via its international calls for research projects and supports international calls for research projects organized by European patient federations.

Discover more : AFM-Telethon and SMA Europe calls for Research projects

An active part in the development of basic and clinical research networks

AFM-Telethon also takes an active part in the development of basic and clinical research networks, in Europe and worldwide.
In Europe, the association is one of the patient associations represented within the governance of the Patient Advisory Board of the European Reference Network for neuromuscular diseases EuroNMD .  

International research networks

AFM-Telethon also participates in international research networks:

  • IRDiRC  (International Rare Diseases Research Consortium) launched by the European Commission and NIH (National Institutes of Health) in the United States to promote the development of therapies and diagnostic tools for rare diseases;
  • EJP-RD  program (European Joint Program on Rare Diseases), a research consortium program on rare diseases funded by the European Union;
  • Treat-NMD ,  a network including researchers, clinicians and patients representatives to supporting novel therapeutic approaches and best practices of care for neuromuscular diseases.  
  • ENMC (European NeuroMuscular Center), an organization lead by patient organizations to promote to fund workshops bringing together clinicians, researchers and patients representatives to tackle specific issues faced by neuromuscular diseases patients.
  • COST Exon-skip, an international network that aims to encourage gene therapies by exon skipping.
  • The association is also a stakeholder in an international initiative centered on therapeutic developments for congenital muscular dystrophies with collagen VI deficiency : Collagen VI Alliance 

In each of these networks, AFM-Telethon promotes the active participation of patient representatives.

Discover more: Our international activities