The RDAF will host a virtual multi-stakeholder workshop dedicated to ‘Registries for rare diseases in Switzerland’ on 30 June, 2:00-5:00 pm (CEST). The workshop aims to discuss the Swiss Rare Disease Registry and disease specific registries and to define pathways to foster the development and synergies between them. Experts in the field of rare diseases from patient organizations, industry, healthcare professionals and public authorities will share their perspective and engage in discussions about the opportunities and challenges for registries for rare diseases.
Internationaler Tag der Seltenen Krankheiten 2026: Gemeinsam Fortschritte stärken und die Versorgung nachhaltig verbessern
Am heutigen Internationalen Tag der Seltenen Krankheiten erinnert das Rare Disease Action Forum (RDAF) daran, dass über 500'000 Menschen in der Schweiz von einer seltenen Erkrankung betroffen sind, viele von ihnen weiterhin ohne gesicherten Zugang zu Diagnose,...