These questions led to the formation of Project Mercury, a patient-led collaborative global initiative to ensure timely access to effective and affordable treatments for people affected by facioscapulohumeral muscular dystrophy (FSHD) everywhere.
Today, March 19th, 2026, FSHD Europe announced its collaboration with TREAT-NMD and the PaLaDIn consortium to develop an FSHD disease model for health technology assessment (HTA), FSHD patient journey and patient advocacy toolkits. FSHD Europe strengthens its capacity in HTA evidence generation through a partnership with the institute for Medical
We celebrate a powerful step forward in raising awareness for Facioscapulohumeral Muscular Dystrophy (FSHD). Under the motto “1 in 10,000”, the FSHD Spain has launched a compelling public awareness campaign—a video directed by the prestigious filmmaker Chus Gutiérrez. This spot is more than a production; it’s a voice for those
Facioscapulohumeral muscular dystrophy (FSHD) is at a turning point, with multiple disease-modifying therapies in development. To ensure global access, clinical trial readiness across diverse regions is critical. This publication idea was initiated through Project Mercury in collaboration with others to offer a practical toolkit for new trial sites. Drawing on