Join our Circle of Friends
Receive updates about our research and events
A research paper on the characteristics and impact of pain on quality of life (QoL) in patients with facioscapulohumeral dystrophy (FSHD) was recently published in Muscle & Nerve (2017). In the paper, analysis is carried out on data collected via the UK FSHD Patient Registry. Phillip Cammish of Newcastle University published a one-page summary of the results.
This study was made possible by those with FSHD joining the patient registry. We encourage you to consider joining the National Registry for DM and FSHD. It is easy, and allows you to be eligible for free genetic testing through a grant provided by Friends of FSH Research and FSH Society.