FSHD 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
FSH-MD Support Group UK
We are here to help improve the quality of life for those who have Facioscapulohumeral Muscular Dystrophy (FSH-MD).
For more information: https://fsh-group.org/
The FSHD Society is the world’s largest research-focused patient organization for FSHD. They have catalysed major advancements and are accelerating the development of treatments and a cure to end the pain, disability, and suffering endured by one million people worldwide who live with FSHD.
For more information: https://www.fshdsociety.org/
This organisation brings together people from all over Europe affected by FSHD. They aim to raise awareness of the condition and encourage higher standards of care. They also support research through the sourcing and allocation funds.
For more information: www.fshd-europe.info
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 FSHD?
- MDUK FSHD Factsheet
- MDUK Muscle Matters Video - covers the causes of FSHD, research developments, clinical trials and more.
- FSHD Society’s FSHD Masterclass
- 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.
- FSH-MD Support Group UK can offer advice and practical support for people living with FSHD
- 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 an English translation of the Dutch 2018 Guidelines for FSHD can be found here
- The 2010 International Workshop Report into Standards of Care for FSHD can be found here.
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 here, or order one to be delivered by post 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 FSHD 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/