Action Duchenne is a national charity set up by Duchenne families in 2001 to promote new research to cure Duchenne. The charity has directly funded a $1.2m research programme with AVI Biopharma and the MDEX consortium to develop exon skipping drugs for Duchenne. Action Duchenne campaigns to implement best practice standards of care for all Duchenne patients.
The DFSG is a national charity run by families for families affected by Duchenne. It provides a positive national support network of parents, their families and professionals. It also fundraises and organises subsidised holidays, events, and workshops.
The Muscular Dystrophy Campaign is the leading UK charity focusing on muscle disease and has pioneered the search for treatments and cures for over 50 years. The MDC funds world-class research to find treatments and cures, campaigns to raise awareness and provides free practical advice, emotional support and signposting to local professionals and groups. The MDC established and supports the North Star database which records the progression of Duchenne by gathering data from patients across the UK, making this an invaluable research and clinical tool.
Information based on consensus statement (published in January 2010)