On June 20, Italy once again joined the global FSHD community in marking World FSHD Day with an impactful mix of public awareness and community engagement. Iconic landmarks across the country lit up in orange—the color of hope and energy for the FSHD community—including the Colosseum, Palazzo Chigi, Palazzo Madama, Montecitorio in Rome, and the Maschio Angioino in Naples. The initiative aimed to shine a light—literally and symbolically—on facioscapulohumeral muscular dystrophy (FSHD), one of the most common forms of muscular dystrophy.
A central event of the Italian celebrations was the 11th National FSHD Conference, organized in Rome by FSHD Italia APS in partnership with UILDM and the AIM FSHD Group. Despite a national train strike, the conference saw strong in-person participation. Considering also online participants, attendees were more than 200. Patients, clinicians, researchers, and institutional representatives gathered for scientific updates, policy discussion, and patient-centered dialogue. The session on ongoing and upcoming clinical trials was particularly well-received among patients, reflecting the rising hope in the research pipeline.
A highlight of the day was the participation of Italy’s Minister for Disability, Alessandra Locatelli, whose presence reinforced institutional commitment to rare disease communities.
In Italy, June 20 holds special significance, having been officially recognized in 2018 as National FSHD Day. The anniversary is inspired by the advocacy of the Biviano brothers, who brought national attention to the daily struggles of people living with neuromuscular diseases.
