…TIMESLOT: Wednesday, 28 May 2025 16:00 CEST
…MAIN TITLE: Clinical Trial Readiness
…PRESENTERS: Dr. Nicol Voermans & Ria de Haas, PhD (Radboud University Nijmegen Medical Centre, the Netherlands)
Nicol Voermans is a neuromuscular neurologist at the Radboudumc in Nijmegen, with over 15 years of clinical and research experience. Her primary research areas include: 1) Faciocapulohumeral dystrophy (FSHD), focusing on genotype-phenotype correlations, trial readiness, optimal symptomatic treatments, trial fitness, and clinical trials; and 2) Congenital myopathies, exploring genotype-phenotype relationships, trial readiness, optimal symptomatic treatments, trial fitness, and clinical trials. Nicol’s research group collaborates with several esteemed researchers, including Prof. Jungbluth in London and Prof. Treves in Basel. In 2021, she founded the FSHD European Trial Network, uniting all researchers and clinicians involved with FSHD across Europe.
Ria de Haas obtained her PhD at the University Medical Center Utrecht, the Netherlands, and spent seven years as a researcher at the Radboud Center for Mitochondrial Medicine, Radboudumc in Nijmegen, the Netherlands. In 2020, she joined the Dutch patient organization Spierziekten Nederland, where she focused on accelerating drug approval and reimbursement for neuromuscular diseases. She also served as the contact person for three diagnostic working groups: Facio Scapulo Humeral Muscular Dystrophy (FSHD), Myotonic Dystrophy (MD), and Spinal Muscular Atrophy (SMA). This role led her to the FSHD field and fueled her passion to dedicate her work entirely to FSHD.
Since early 2024, Ria has been involved with FSHD Europe/FSHD European Trial Network (ETN), the umbrella organization for European patient organizations, where she actively contributes to the international FSHD community. Additionally, she serves as an advisor for the Dutch foundation FSHD Stichting and the FSHD diagnosis working group at Spierziekten Nederland.