This year the IRC was organized in Denver, Colorado, U.S. followed by the FSHD Connect Meeting. Bringing together hundreds of individuals and families living with FSHD, clinicians, and researchers. Attendees have found out about the latest research, drug developments, and clinical trials, as well as managing symptoms to navigate the challenges of daily life, meeting and learning from other patients and families. For more information please see the abstract book: 2024-IRC-Abstract-Book_FINAL.pdf (fshdsociety.org). FSHD Europe has presented a poster on the FSHD European Trial Network, which you can find here.
Save the date: 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.
