What is a neuromuscular disease?
A neuromuscular disease is a disease that affects the nerves and/or muscles. Every neuromuscular disease is different,discover the neuromuscular diseases and their impact on your life.
Can I join the registry?
Yes of course! As long as:
- You suffer from a neuromuscular disease
- You are registered within a neuromuscular disease reference centre
- You agree to have some of your medical information placed in the registry
I wish to participate, but remain anonymous! Is this possible?
Yes, of course! All information we receive is anonymous. Only the doctor who treats you is able to identify you.
The registry is essential for scientific research and to improve the quality of care!
Neuromuscular diseases are rare, but often serious. Some of them are fatal. They can affect children or adults, and are characterised by a loss of strength that generates disability and suffering on a daily basis. Few treatments are available, but scientific research is very active and making headway every year. Researchers are constantly looking for patients to take part in therapeutic trials. Joining the registry allows us to tell your doctor if a new treatment could be tried to treat your disease. Discover the registry and how it works.