Report of the RDAF Multi-Stakeholder Workshop on Registries for Rare Diseases

14 Jul, 2021

The Rare Disease Action Forum (RDAF) published the report about its multi-stakeholder workshop on ‘Registries for rare diseases in Switzerland’ which took place on 30 June 2021. The report provides an overview of the expert presentations and summarizes the exchanges within the roundtable discussion on disease specific registries. Representatives from patient organizations and industry, a healthcare professional, a legal expert and a member of the Swiss Parliament presented complementary perspectives on the current situation, the challenges and opportunities related to registries for rare diseases in Switzerland. They also outlined perspectives for the future development and called for unified action with the aim of fostering research and therapy development and increasing patients’ access to diagnosis, treatment and care. The full report is available here.

The next workshop of the RDAF will take place in autumn and will focus on market access. More information will be available in due time.

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,...

Gemeinsam für eine bessere Versorgung

Am 28. Februar 2025 begehen wir den Internationalen Tag der Seltenen Krankheiten. Dieser Tag macht darauf aufmerksam, dass Millionen von Menschen weltweit – und auch hier in der Schweiz – mit seltenen Krankheiten leben und oft vor grossen Herausforderungen stehen. Das...