Fabiola Bertinotti

Vice-president of FSHD Europe

Since Fabiola's adopted son was diagnosed with Facioscapulohumeral Muscular Dystrophy in 2005, Fabiola became deeply involved in the world of neuromuscular diseases. In Italy, Fabiola has been an active member of patient’s association Unione Lotta alle Distrofia Muscolare (UILDM), and has recently joined Coordinamento Associazioni Neuromusculari (CAMN).

At an international level, Fabiola is one of the founding members of FSHD EUROPE, a federation of local FSHD and other Muscular Dystrophy organizations whose main objective is to represent the interests of these European organizations in relation to their various international stakeholders. After serving for three years as president, during which the association expanded its reach to include various European FSHD and other Muscular Dystrophy local associations, Fabiola has been appointed Vice-president with specific focus on patient’s interests and TREAT-NMD. Fabiola is passionate about open science and co-creation and has enrolled into the EURORDIS Summer School program.

Website www.fshd-europe.info