Fabiola Bertinotti

Italy

Since Fabiola’s adopted son was diagnosed with Facio-Scapulo-Humeral Muscular Dystrophy (FSHD) in 2005, Fabiola became deeply involved in the world of neuromuscular diseases. In Italy, Fabiola has been an active member of the Patient Association Unione Lotta alle Distrofia Muscolare (UILDM), while on an international level, she represents Italian FSHD patients and UILDM within TREAT-NMD, where she currently covers various roles. These include member of the Executive Committee, member of TACT (highly specialized review body for the development of new therapies), chair-lady of TREAT-NMD FSHD Task Force, and member of the TEB (TREAT-NMD Ethics Board).

Furthermore, since 2021 Fabiola has been sitting within the Directive Committee of  FSHD World Alliance, a federation of local FSHD and other Muscular Dystrophy organizations whose main objective is to represent the interests of these Patient Organizations in relation to their various international stakeholders. Fabiola is passionate about open science and co-creation and has achieved two Patient Advocacy certificates (Genetics and New Drug Development) run by selective EURORDIS School programs.