Meeting report: the 2023 FSHD international research congress

Abstract

Facioscapulohumeral muscular dystrophy (FSHD) is one of the most common inherited muscular dystrophies. As part of the FSHD Society's commitment to promote global communication and collaboration among researchers, the Society collaborated with FSHD Europe and convened its 30th annual International Research Congress (IRC) on June 15–16, 2023, in the city of Milan, Italy. Over 240 researchers, clinicians, patients and pharmaceutical company representatives from a wide geographical background participated to hear about the latest developments and breakthroughs in the field. The meeting was structured to provide a mix of basic and clinical research in five sessions: 1. Discovery research & genetics; 2. Outcome assessments; 3. Disease mechanisms & interventional strategies; 4. Clinical studies & trial design; and 5. Pediatric FSHD. The keynote speakers were Professor Baziel van Engelen (on the importance of incorporating the patient's voice to help refine and improve basic laboratory and clinical research) and Dr. Bénédict Chazaud (on the role of the immune system in normal muscle regeneration and in Duchenne muscular dystrophy). The FSHD IRC was preceded by the Industry Collaborative for Therapeutic Development in FSHD meeting and followed by the World FSHD Alliance network of national patient groups and advocacy organizations for FSHD summit. The Congress concluded with the announcement for the 2024 International Research Congress, which will take place on June 13–14, 2024 in Denver, Colorado, USA, and followed by the FSHD Society's flagship educational conference for the FSHD community, the Patient Connect Conference, on June 15–16, 2024.