Myotonic Dystrophy Information

What is Myotonic Dystrophy?

Get Support

  • Information on NHS Social Prescribing - connecting people to activities, groups, and services in their community to meet the practical, social and emotional needs that affect their health and wellbeing.

  • 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.

  • National Autistic Society offers help and support to autistic people in the UK and their families.

Information about Genetics