Myotonic Dystrophy is one of the most common muscular dystrophies worldwide. There are various national and international organisations who help support people dealing with this condition.
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: www.muscular-dystrophy.org
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://congenitalmyotonicdystrophy.org
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/
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/
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
Other Useful Resources
What is Myotonic Dystrophy?
- MDUK support page and helpline: 08006526352
- Pathfinders Neuromuscular Alliance have an Adcocacy & Support Service to support people with muscle-weakening conditions and their PAs/carers.
- MDUK local muscle groups meet either in person or via zoom and offer a chance to connect with others affected my Muscular Dystrophy in your region.
- CureDM and MDSG can offer advice and practical support for people living with Myotonic Dystrophy in the UK
- Muscular Dystrophy Support Centre – physio led centre in the midlands. Also offer online social events.
- The NeuroMuscular Centre (NMC) – The NMC, based in Cheshire, provides a range of unique services and specialist advice with the sole aim of improving the quality of life for adults with neuromuscular conditions
- Share4Rare - Share4Rare is a European project which aims to improve the quality of life of those affected by a rare disease. The platform is a safe space where patients and carers can connect, share knowledge and get involved in scientific research
- Rareminds work in partnership with patient organisations to provide psychotherapeutic counselling, groups, and training about the mental health impact of rare conditions.
- Unique provide support, information and networking to families affected by rare chromosome and gene disorders.
Information about Genetics
- NHS information on genetic testing
- British Society for Genetic Medicine
- Genetic Alliance UK - the largest alliance of organisations supporting people with genetic, rare and undiagnosed conditions in the UK. They advocate for fast and accurate diagnosis, good quality care and access to the best treatments.
- Gene People provide valuable resources for adults and children affected by genetic disorders.
Standards of Care
- Standards of care have not yet been finalised in the UK, however consensus-based care recommendations can be found at the links below
MDUK produces ‘alert cards’, conveniently shaped to fit inside a wallet and outline key recommendations and precautions that a non-specialist clinician would need to know during a time of worsening health. Download and print your own, or order one to be delivered to you - more info here.
Find a neuromuscular specialist
- The NHS Services ‘find neurology services’ page can be found here
- The MDUK ‘in your area’ search can also be used to find local NHS specialist services
Please note the UK DM registry will inform all registry participants by email of any clinical trials opening in the UK for which they might be eligible. We do not endorse or encourage the use of any third-party clinical trial finder resources
- General information about clinical trials can be found on the NHS website
- MDUK has dedicated webpages for general information on clinical trials, and guidelines for official clinical studies.
- All official clinical trials are listed on https://clinicaltrials.gov/