Ria de Haas

Previously, I obtained my PhD degree at the University Medical Center Utrecht, the Netherlands and worked for seven years as researcher at the Radboud Center for Mitochondrial Medicine, Radboudumc in Nijmegen, the Netherlands. In 2020, I started working at the Dutch patient organization Spierziekten Nederland, focusing on acceleration of drug approval and reimbursement of medicines for neuromuscular diseases. I also served as the contact person for three diagnosis working groups, Facio Scapulo Humeral muscular Dystrophy (FSHD), Myotonic Dystrophy (MD), and Spinal Muscular Atrophy (SMA). This role introduced me to the FSHD field and sparked my enthusiasm to fully dedicate my work to FSHD. I currently serve as an advisor for the Dutch foundation FSHD Stichting and the FSHD diagnosis working group at Spierziekten Nederland.

Since early 2024, I have been part of FSHD Europe, a non-profit umbrella organisation established in 2010 by individuals living with FSHD and their close relatives, united by a powerful belief in the strength of cross border collaboration. Today, FSHD Europe proudly represents 14 member organisations across 12 European countries, each dedicated to supporting people with FSHD in their unique national contexts. The organisation is recognised for implementing effective, patient focused projects. In 2021, FSHD Europe launched the FSHD European Trial Network (ETN) to enhance collaboration and support trial readiness, building upon existing FSHD research in Europe. The ETN currently features five active working groups, each co-led by prominent experts. FSHD Europe uniquely connects both a patient community and a network of clinicians across the continent. For more information, visit www.fshd-europe.info