What is a neuromuscular disease?
A neuromuscular disease is a disease that affects the nerves and/or muscles. Every neuromuscular disease is different and has a different impact on your life. Discover the neuromuscular diseases.
Can I join the registry?
Yes, of course! As long as:
- You suffer from a neuromuscular disease.
- You are followed at a neuromuscular reference centre.
- You agree to share certain medical data with the registry.
I wish to participate, but would like to remain anonymous! Is this possible?
Yes, of course! All information we receive is anonymous. Only your treating physician 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 severe. Some of them are fatal. They can affect both children and adults, and are characterised by loss of muscle strength which leads to disability and suffering on a daily basis. Few treatments are available, but scientific research is ongoing and making headway every year. Researchers are constantly looking for patients to participate in therapeutic trials. Joining the registry allows us to inform your physician about new treatments for your disease. Discover the registry and how it works.