Patient advocacy organizations

These groups are formally organized nonprofit groups, often founded by parents within the rare disease community. They help raise awareness of rare diseases, connect patients and families for educational and supportive services, and direct funds toward research for diagnostic testing and groundbreaking therapeutics. A few such organizations for neuromuscular diseases include:

We recognize that COVID-19 is a major concern for patients with neuromuscular disorders. We encourage you to look at the Washington University Physician’s website for the most up-to-date information and to be in touch with your physician regarding questions. Please know we are working hard to protect the safety and well-being of the community and our patients with neuromuscular disorders.