Useful Organisations

FSHD is one of the most common muscular dystrophies worldwide. There are various organisations across the UK and Europe who help support people dealing with this condition. More information about these groups is listed below.


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:


FSH MD Support UK

Founded in the 1980's by Norman and Lorraine Jonas after their eldest daughter was diagnosed with FSHD, the group was set up with the aim to enable people with FSHD and their families to meet and share experiences, to find out more about research into this particular type of muscular dystrophy and to help people come to terms with FSHD once it has been diagnosed. The aim was also to increase awareness about the group so that others with FSHD knew that they could contact us for support.

For more information:


FSHD Europe

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:


The TREAT-NMD Alliance

This global network provides an infrastructure to promote the development of therapies for neuromuscular disorders; it focuses on creating and implementing tools, such as this registry, 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: