Italy’s FSHD community gathers in Rome on World FSHD Day
On 20 June 2026, FSHD Italia APS will host the XII National FSHD Conference in Rome — on World FSHD Day itself — bringing together patients, caregivers, clinicians and researchers for a full day of science, advocacy and community. The event takes place at UNA Hotels Decò (Sala Campidoglio), is free of charge and available in live streaming, with prior registration.
The conference is organised in collaboration with UILDM and the FSHD Group of AIM (Italian Association of Myology).
“Because no one gets left behind”
This is the tagline of the 2026 edition — and it reflects a deliberate choice. People living with FSHD are not a uniform group: some are waiting for a disease-modifying therapy, others need better support and answers today, and others look to muscle regeneration as their only concrete hope. The programme is built to speak to all three groups — not just those who may benefit from the next approved drug.
What’s on the programme
The day is structured around five sessions:
FSHD care pathways in Italy — The Lazio region has developed an integrated care pathway (PDTA) for FSHD under the leadership of Prof. Enzo Ricci. The opening session presents this model as a national benchmark, with Prof. Antonio Giulio De Belvis (Università Cattolica del Sacro Cuore) addressing the real-world challenges of rare disease pathways for specialised hospitals.
Wellbeing of the person with FSHD — A dedicated session on orthotics and assistive devices, the psychological impact of facial muscle involvement, and its effects on communication and speech — including direct patient testimony.
Muscle regeneration in FSHD: from the state of the art to therapeutic perspectives —
Two internationally recognised researchers bring the latest evidence: Prof. Giulio Cossu (University of Manchester) and Prof. Ornella Parolini (Università Cattolica del Sacro Cuore), a pioneer in placental stem cell research.
Genetic diagnosis of FSHD — Prof. Emiliano Giardina (Università di Roma Tor Vergata) leads an interactive session on differential diagnosis, epigenetics, prenatal and preimplantation testing — with real clinical cases.
Clinical trials and access to therapies — Dr. Mauro Monforte and Prof. Valeria Sansone (Centro Clinico NeMo, Brescia) review the current trial pipeline, followed by Dr. Ginevra Mastroianni (Pharma Value) on HTA assessment and NHS reimbursement for rare disease drugs.
Roundtable: Access to care — challenges, rights, alliances
The closing roundtable, moderated by Prof. Massimiliano Filosto (Coordinator of the FSHD Group of AIM), brings together UILDM, FSHD Italia APS, Fondazione Telethon ETS and a patient with FSHD to address one shared question: when effective therapies arrive, how do we make sure no Italian patient is left behind? Prof. Filosto will also present an update on the national FSHD patient registry.
For programme and registrations, see: https://www.fshditalia.org/convegno-nazionale-fshd-2026/