ProRaris calls for Swiss authorities to take urgent actions to enable participation of Swiss healthcare providers and reference centers for rare diseases in the European Reference Networks (ERNs). Swiss healthcare providers are currently unable to be part of the ERNs due to the prevailing political situation. The RDAF supports the petition as participation in the ERNs is vital to maintain Switzerland’s attractivity in the area of research as well as to improve the availability and quality of treatments and care for patients with 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,...