Patient & Caregiver Resources

The Care of Congenital Myopathy: A Guide for Families is a comprehensive and valuable resource for those with Nemaline Myopathy, representing the expertise and experience of medical professionals and families from all around the world.

Accurate confirmation of your Nemaline Myopathy diagnosis and genetic subtype is one of the first steps you can take to help researchers track prevalence and disease development.

Join these genetic registries to share your anonymized data with researchers and help researchers determine if you are a candidate for possible future clinical trials.