Myotonic Dystrophy Support Group (MDSG)


The Myotonic Dystrophy Support Group is a registered charity dedicated to offering the hand of friendship and support to all those affected by Myotonic Dystrophy. We have a central helpline and a network of regional contacts throughout much of the UK.


With the support of 77 patient groups, Genetic Alliance UK has launched a landmark Patient Charter that highlights the concerns patients have about the new approach the Government and NICE are using to determine whether or not medicines for rare conditions are made available through the NHS.

MDSG Conference 2014.

The next MDSG conference will be on Saturday 7th June 2014 at the East Midlands Conference Centre, Nottingham. ONLINE BOOKING OPEN!! Join us and Celebrate 25 years of the charity and all the work and dedication that has made it a success.


As part of our concern to improve the quality of life for those affected by Myotonic Dystrophy, we keep closely informed about all research in this field.

We publish some research results on this website or in our newsletter.

New Multinational Study for DM1 Launched in Newcastle.

OPTIMISTIC is a multinational study.It aims to investigate how cognitive behavioural therapy can help in levels of fatigue and physical activity in patients with DM1.

Contact Families

Click the map for Information on our Contact Families. They can provide practical non-medical information.

MDSG Online Services

MDSG Newsletter

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Registered Charity No. 1134499 Company No 07144171.