News

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.

Next year the IRC will take place in Amsterdam, the Netherlands on June 19-20, 2025. Furthermore, FSHD Europe is aiming to organize the first European FSHD Connect Meeting in collaboration with the FSHD Society on June 21-22, 2025, in Amsterdam.

Fulcrum Therapeutics, Inc.® (Fulcrum) (Nasdaq: FULC), a clinical-stage biopharmaceutical company focused on developing small molecules, today announced that it has entered into a collaboration and license agreement with Sanofi (Nasdaq: SNY) for the development and commercialization of losmapimod, an oral small molecule being investigated for the treatment of facioscapulohumeral muscular dystrophy (FSHD).

In 2012, a standard procedure was established for the genetic diagnosis of facioscapulohumeral muscular dystrophy (FSHD). Due to the increasing complexity of FSHD genetics, the rise in genetic testing centers, and the start of clinical trials for FSHD, an update on the genetic features of FSHD and international testing guidelines is needed.

The FSHD ETN hopes that you have made a good start of 2024!! We are very pleased with the steps already taken and work that has been done, here we give you a short update on our activities and plans for this year.

W​​​​hile FSHD patients wait for new drugs to slow the progression of muscle weakness, Dr. Voermans emphasizes that there are many interventions already that can have a significant positive benefit. She encourages everyone with FSHD to do what they can to be as healthy and “trial fit” as possible. 

We are pleased to announce the appointment of Ria de Haas as Project Manager for both FSHD Europe and the FSHD European Trial Network.