UK Organisations 

Muscular Dystrophy UK
This charity was founded in 1959 and is an important contact for people with a muscular dystrophy or related neuromuscular condition. They fund world class research and provide practical information, advice, and emotional support to people affected by all types of muscular dystrophy and related neuromuscular conditions.
For more information: https://www.musculardystrophyuk.org/.

MDUK's most recent Virtual Information Seminar for Myotonic Dystrophy was held on 14th January 2025 and can be viewed oon YouTube here.

Cure DM
A dedicated charity raising funds to provide support to those affected by Myotonic Dystrophy, their families and carers, particularly congenital and childhood onset. Organising get togethers for peer support and facilitating research into this rare disease, advocating for DM in science and medicine.
For more information: https://www.curedm.co.uk/  

Myotonic Dystrophy Support Group 
Myotonic Dystrophy Support Group is a registered charity, run by volunteers and dedicated to offering the hand of friendship and support to all those affected by Myotonic Dystrophy.
For more information: https://www.myotonicdystrophysupportgroup.org/​ 

International Organisations

Myotonic Dystrophy Foundation
The Myotonic Dystrophy Foundation (MDF) is the leading global advocate helping patients and families navigate the myotonic dystrophy (DM) disease process, and is often the first resource contacted by newly-diagnosed patients, their families, their social workers and their physicians around the world.
For more information: https://www.myotonic.org/ 
 
TREAT-NMD 
This global network provides an infrastructure to promote the development of therapies for neuromuscular disorders; it focuses on creating and implementing tools that can be used to bring treatments from development to patients. They offer information to researchers and patients seeking to improve standards of care for neuromuscular disorders.
For information: www.treat-nmd.org