These organisations are not run by people with muscle-weakening conditions but still provide a valuable service
Muscular Dystrophy UK
MDUK supports individuals and families living with muscle-wasting conditions. They support research to drive the development of effective treatments and cures, ensure access to specialist NHS care and support and provide services and promote opportunities to enable individuals and their families to live as independently as possible. MDUK provides a database of services for people with neuromuscular conditions
Duchenne UK
Duchenne UK is a charity run by parents of young people with Duchenne muscular dystrophy and works to end Duchenne. Duchenne UK works hard to connect researchers, industry the NHS and patients to improve the drug development process and speed up access to treatments. Duchenne UK also works with the Duchenne community and charities such as Pathfinders Neuromuscular Alliance to improve the life of those living with Duchenne.
TreatSMA
TreatSMA is a UK initiative of people living with Spinal Muscular Atrophy (SMA) including parents and carers who have joined hands to improve the diagnostics, standards of care, social support and access and provision to treatments in this severe genetic disorder. TreatSMA operates a 24/7 phone line and holds regular webinars to teach and spread awareness of SMA as well as campaign and advocate.