FSHD Europe
The united European Voice for People with FSHD

We are excited to announce that FSHD Finland has joined FSHD Europe. Lauri Pirinen and Lora Chun are the patient representatives of FSHD Finland. They did an incredible job in starting their own organization in a very short time. We look forward to a successful collaboration.

Curious about their inspiring story? In a case study, they share how FSHD Finland was established, and it provides valuable insights to encourage other countries to start their own patient organization. 

FSHD Europe participated in the 279th ENMC workshop “Classification, clinical care, outcome measures and biomarkers in childhood-onset FSHD: towards standardising clinical care and ensuring clinical trial readiness”. Twenty-seven participants, including clinicians, research experts, patient advocates, and industry representatives, from 14 different countries engaged in this workshop.
FSHD Europe would like to thank the organizers, Dr C. Erasmus (The Netherlands), Prof. K. Mathews (USA), K. de Valle (Australia) and Prof. T. Willis (UK), for the opportunity to present on the FSHD European Trial Network & Market Access. We had very interesting and fruitful discussions on the spectrum of FSHD, the challenges of trials in children, and the most appropriate clinical outcome measures. Gaps of knowledge were defined, and task groups were formed to work on this. Hence, we will continue working together towards clinical trial readiness for children with FSHD.
For more information, please read the lay report which is published on the ENMC website (click here).
Lay reports – ENMC

Save the date: FSHD Connect Europe patient meeting 2025
FSHD Europe will organize, in collaboration with the FSHD Society, the first FSHD Connect Europe meeting on June 13th – June 15th, 2025, in Amsterdam, The Netherlands.