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Posted On: October 30th 2026, 06:00 pm
Congratulations to @fshd_europe on their new publication in Neuromuscular Disorders: “Facioscapulohumeral muscular dystrophy: revisiting three prevailing assumptions through the perspective of FSHD Europe.”
The authors challenge long-held assumptions about how FSHD progresses, how it is classified, and how it is treated. The paper reinforces three messages our global community shares:
1. FSHD is a disease spectrum. Onset can occur at any age, from childhood to late adulthood.
2. FSHD is progressive, but its course is highly variable from person to person.
3. Meaningful care exists today. Personalized, multidisciplinary care should remain central while disease-modifying therapies are developed.
“It’s great to see the global FSHD community sharing one clear message,” said Dr. Lucienne Ronco, Chief Science Officer at the FSHD Society. “People living with FSHD don’t have to wait for future therapies to get meaningful care. Multidisciplinary support for mobility, breathing, sleep, pain, and fatigue makes a real difference today, and it should stay at the heart of care as new treatments arrive. Thank you, FSHD Europe, for championing this!”
Read the full publication: https://www.nmd-journal.com/article/S0960-8966(26)01089-8/fulltext
#FSHD #FSHMuscularDystrophy #FSHAwareness #FSHDAwareness #FSHDResearch
The authors challenge long-held assumptions about how FSHD progresses, how it is classified, and how it is treated. The paper reinforces three messages our global community shares:
1. FSHD is a disease spectrum. Onset can occur at any age, from childhood to late adulthood.
2. FSHD is progressive, but its course is highly variable from person to person.
3. Meaningful care exists today. Personalized, multidisciplinary care should remain central while disease-modifying therapies are developed.
“It’s great to see the global FSHD community sharing one clear message,” said Dr. Lucienne Ronco, Chief Science Officer at the FSHD Society. “People living with FSHD don’t have to wait for future therapies to get meaningful care. Multidisciplinary support for mobility, breathing, sleep, pain, and fatigue makes a real difference today, and it should stay at the heart of care as new treatments arrive. Thank you, FSHD Europe, for championing this!”
Read the full publication: https://www.nmd-journal.com/article/S0960-8966(26)01089-8/fulltext
#FSHD #FSHMuscularDystrophy #FSHAwareness #FSHDAwareness #FSHDResearch
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