Duchenne Family Support Group

78 York Street
London
W1H 1DP

Tel (helpline): 0800 121 4518
Tel: 0870 241 1857
Web: www.dfsg.org.uk

The Duchenne Family Support Group (DFSG) was founded in 1987 by a small group of parents who had children diagnosed with Duchenne muscular dystrophy (DMD). Since then the number of families has increased dramatically and they now have members across the UK, plus some families living overseas.

The DFSG is a national charity run by families for families affected by DMD. It provides a positive national support network of parents, their families and professionals. The DFSG helps bring families together for mutual support, sharing of information and experiences, and social activities.

They have a national network of contact families, who are there for support and advice, and they also have a national helpline which is run by volunteers who are themselves affected by DMD.

The DFSG recognises that many families like to meet up socially and they therefore organise two or three group holidays each year, and additional days out, for example to Newmarket Races, plus an annual New Year's Eve party.

A quarterly newsletter is produced, the Duchenne News, and an annual conference is held when speakers are invited on topics ranging from spinal correction surgery and respiratory management to the latest research and aids and adaptations.

Membership is free and is open to all families and people affected by DMD. They also have a free associate membership scheme for professionals and other supporters.