FSHD Europe
The European Voice
for People with FSHD
Research
To make the right clinical decisions or develop effective diagnostic test and treatment, it is important to understand the underlying mechanisms of a disease.
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FSHD European Trial Network (ETN)
Nicol Voermans as chair and Pascal Laforet as vice chair; George Padberg and Baziel van Engelen as advisors coordinate this project, initiated by FSHD Europe.
The primary goal of the FSHD European Trial Network is to connect the clinicians involved in care for FSHD in all European countries and increase the trial capacity in Europe allowing more centres to participate in upcoming trials and making new treatments widely accessible to patients.
News & articles
Fulcrum Therapeutics Announces Topline Results from Phase 3 REACH Clinical Trial
On September 12th, 2024, Fulcrum announced that its Phase 3 REACH trial evaluating losmapimod in patients with FSHD, did not achieve its primary endpoint of change from baseline in RSA (measure of reachable workspace) with losmapimod compared to placebo. In addition, secondary endpoints did not achieve nominal statistical significance. The company decided to suspend its development of Losmapimod.
FORTITUDE Trial interim results
The company Avidity shared a press release to announce initial AOC 1020 data from the Phase 1/2 FORTITUDE™ trial in adults living with FSHD.
World FSHD Day June 20th 2024
The first World FSHD Day was celebrated on June 20, 2016. Three years earlier, brothers Marco and Sandro Biviano traveled from their home on Lipari, Italy to Rome to advocate for better access to medical care.
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We aim to be open and transparent in our approach and be respectful of cultural differences and the priorities of individual member organisations.