Ria de Haas | CEO
FSHD Europe

Ria de Haas, PhD, is an experienced patient advocate in the field of neuromuscular diseases and currently serves as CEO of FSHD Europe, a non-profit umbrella organisation representing national facioscapulohumeral muscular dystrophy (FSHD) patient organisations across Europe. As a EUPATI Fellow, she has been trained across the full medicines research and development pathway, from target identification and clinical development to regulatory approval, post-market access and the use of real-world evidence. Ria brings six years of experience in patient advocacy, a PhD from University Medical Centre Utrecht in the Netherlands, and more than seven years of pre-clinical research experience in mitochondrial medicine at Radboudumc. Her work focuses on bringing together patients, clinicians, researchers, industry partners, payers and regulators to advance drug development and healthcare policy. She has built strategic international partnerships, secured grant funding and translated patient needs into programmes with meaningful impact. Through FSHD Europe, Ria contributes to European and global multi-stakeholder initiatives in health technology assessment, clinical trial readiness and treatment readiness. She is committed to improving health outcomes through patient-centred, collaborative innovation.