MD Related Links
Duchenne Family Support Group
Description: Started in 1987 by a small group of parents who had children diagnosed as having Duchenne Muscular Dystrophy (DMD), the DFSG is now a national UK charity run by families for families affected by DMD.
European Alliance of Neuromuscular Disorders Associations
Description: European Alliance of Neuromuscular Disorders Associations
Global FKRP Registry
Description: The Global FKRP Registry is an international registry that collects genetic and clinical data about persons affected by conditions caused by mutations in the FKRP (Fukutin Related Protein) gene, namely Limb Girdle Muscular Dystrophy type 2I (LGMD2I), and the rarer conditions Congenital Muscular Dystrophy (MDC1C), Muscle Eye Brain Disease (MEB) and Walker-Warburg Syndrome (WWS).). The Registry aims to facilitate recruitment into clinical trials as registered patients can be identified more readily.
Muscular Dystrophy Association of America
Description: The Muscular Dystrophy Assocation is a national voluntary health agency dedicated to conquering more than 40 neuromuscular diseases that affect a million Americans of all ages
Muscular Dystrophy Australia
Description: "Working towards a world without Muscular Dystrophy – but in the mean time, there's the MDA providing Support and Hope as an organisation respected by and a proponent of the MD Community."
Muscular Dystrophy Campaign
Description: The Muscular Dystrophy Campaign is the only UK charity focussing on all muscular dystrophies and allied disorders.
The Jennifer Trust
Description: The Jennifer Trust for Spinal Muscular Atrophy is the only national charity in the UK dedicated both to supporting people affected by SMA, and investing in essential research into causes, treatments and eventually a cure for the condition.
Description: TREAT-NMD is a network for people with neuromuscular conditions and professionals working in the field. It aims to advance diagnosis and care and develop new treatments for the benefit of patients and families.