UK Organisations 

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: https://www.musculardystrophyuk.org/. 
 
MDUK's most recent Virtual Information Seminar for FSHD was held on 20th June 2024 and can be viewed on YouTube here. 

FSHD UK 
This  registered charity and multi-stakeholder coordination group aims to expedite FSHD clinical trials to the UK, and supports local patient engagement events throughout the UK. 
For more information: https://fshduk.com/

International Organisations

FSHD Society 
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/ 

FSHD Society have a downloadable ICD-10 postcard for your FSHD clinician, available here. 
   
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: www.fshd-europe.info 

TREAT-NMD  
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