FSHD Information

What is FSHD?

• MDUK FSHD Factsheet 

• MDUK Muscle Matters Video - covers the causes of FSHD, research developments, clinical trials and more. 

• MDUK FSHD Information Webinar - YouTube recording of webinar held on 20th June 2024, with experts discussing progress into research and key points about living with and managing the condition. 

• FSHD Society’s FSHD Masterclass

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 Advocacy & 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 FSHD 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 

• 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.