Patient information

Still have questions?

In our study information for parents and affected children and adults, you will find comprehensive information about the registry, as well as the consent form for enrollment in the registry. You can discuss this with your doctor.  

Information for parents
Information for adults

The study information has recently been updated. All changes can be viewed in the following document:
Changes on study information 

Where can you or your child find support?

Switzerland has a network of specialists for the care of people with neuromuscular disorders. Medical care and advice is available, for example, at the neuromuscular centres in Basel, Bern, St. Gallen, Zurich, Lausanne, Geneva and Ticino.

Patient organizations also offer helpful support or advice for many questions:

ASRIMM – Association Suisse Romande Intervenant contre les Maladies neuromusculaires
MGR – Associazione malattie genetiche rare della svizzera italiana
ssem/fsrmm – schweizerische stiftung für die erforschung der muskelkrankheiten
SMA Schweiz
Duchenne Schweiz
ProRaris – Allianz Seltener Krankheiten, Schweiz
Inclusion Handicap
Pro Infirmis
Konferenz der Vereinigung von Eltern behinderter Kinder (KVEB)