European Neuromuscular Centre



We are associate partners of the European Neuromuscular Centre (ENMC), an organisation founded in 1992 by a group of European patient associations to bring leading researchers and clinicians from all over the world together. Today, it is an active network of over 2,500 researchers, clinicians and patients.

The ENMC organises and finances workshops on an application basis. Topics of the workshops vary from outcome measures, clinical trial readiness and preclinical studies, to diagnosis and care for all neuromuscular diseases. Active participation by people living with a neuromuscular disease gives them a chance to discuss their needs with scientists and clinicians. The community is informed of workshop outcomes via publications in scientific journals, the ENMC website and through social media. 







As an Associate Partner organisation we:

  • help in encouraging and facilitating communication and collaboration in the field of SMA research, with the aim of improving diagnosis, finding effective treatments and optimising standards of care to improve the quality of life of people affected by SMA.
  • work with the ENMC to deliver its mission through co-sponsoring and contributing the patient-perspective to many ENMC workshops on SMA, but also on other topics.
  • will, in the near future, contribute to thematic workshops
  • will, in time, become part of sub-committees to work together with the ENMC on strategic innovations and new projects.


Workshops we have played an active role in