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.

Since early 2024, I have been part of FSHD Europe/ FSHD European Trial Network (ETN), the umbrella organization for European patient organizations, actively contributing to the international FSHD community. Additionally, I serve as an advisor for the Dutch foundation FSHD Stichting and the FSHD diagnosis working group at Spierziekten Nederland.