On April 4, 2025, VSOP and NFU will jointly organize the second edition of the National Conference on Rare Diseases at the NBC Conference Center in Nieuwegein.

Healthcare professionals, patient organizations, researchers, and policymakers in the field of rare diseases are warmly invited to register for this conference. The theme of the day is:
“Stronger Together for Rare: Connected Regionally, Nationally, and Across Europe.” In addition to the plenary program, the conference features several interactive workshops, including:

• Prof. Dr. Wendy van Zelst-Stams, Professor of Care for Rare Diseases at Radboudumc, will lead a session on undiagnosed patients. This workshop explores the profound impact of lacking a diagnosis on both children and their parents, and discusses what can be done to support them in getting answers. Inspiring examples, such as the Undiagnosed Hackathon by the Wilhelm Foundation, will be highlighted.
• From the FAST hub RARE-NL, Prof. Dr. Carla Hollak, founder of Medicines for Society (Amsterdam UMC), and Saco de Visser (FAST), will give a workshop on medicine development for patients with rare diseases.
• Dr. Mayke Oosterloo, neurologist, and Prof. Dr. Daniel Keszthelyi, gastroenterologist at Maastricht UMC+, will co-host a workshop together with patient representatives. The session focuses on collaboration between Centers of Expertise and patient organizations in the Netherlands.

📅 More information and registration: Aanmelden NCZA 2025 | VSOP