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7 September marks International Duchenne Muscular Dystrophy Awareness Day
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Today marks the 12th World Duchenne Awareness Day. It raises awareness of this neuromuscular condition, which affects around 250,000 boys worldwide.
This year’s theme is “Access changes lives”. Whether it is access to healthcare, support, technology, knowledge, the support needed to make informed decisions, or inclusion, there is still room for improvement in all these areas for patients with Duchenne muscular dystrophy.
This 2026 edition marks the 40th anniversary of the discovery of the gene responsible for Duchenne muscular dystrophy. Since then, everything has changed for families affected by the most common neuromuscular disorder in children: 140 clinical trials are currently underway worldwide, including 13 in France; the first potential treatments are emerging; and patients have gained nearly 10 years of life expectancy.
Research into Duchenne muscular dystrophy carried out at the institute
At the Center for research in Myology, France Pietri-Rouxel heads the ‘Maintenance of Muscle Mass and Strength & Optimisation of AAV-based Gene Therapies’ group (MOOVE), which aims to optimise the therapeutic approach to treating Duchenne muscular dystrophy, to characterise Becker patients with the exonPartie codante de l’ADN au sein d’un gène. 45–55 deletion at the phenotypic and genomic levels, and to unravelling the mechanisms governing skeletal muscle plasticity – an essential step in understanding its pathophysiological processes.