Myotonic Dystrophy Support Group

19-21 Main Road

Tel: (Helpline) 0115 987 0080, (Office) 0115 987 5869


The Myotonic Dystrophy Support Group provides information and support to families and professionals affected by the neuromuscular condition, myotonic dystrophy. As volunteers, members of the group offer help and support to one another by telephone links and correspondence. Contact families in different areas of the country enable individuals and families to be put in touch with one another locally if they wish. Through their personal involvement and experience, contact families know much of what others experience. They are there when others need to talk and share concerns. The Group offers the hand of friendship to end the sense of isolation often experienced both before and after diagnosis. Other agencies can be suggested to turn to if specialised help is required.

The Group has information which deals specifically with myotonic dystrophy. This information is updated to keep abreast of new developments in research. Alert cards are available from the Group: these are pocket-sized cards which allow people with myotonic dystrophy to communicate their special requirements in an emergency. All members receive a quarterly newsletter published for and by the Group. Some areas arrange regional meetings to enable families to meet in an informal setting. The Group also holds an annual conference.

Last updated on 25/08/2015

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