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.
RDAF hosts multi-stakeholder workshop on post-marketing registries
The Rare Disease Action Forum (RDAF) will host a multi-stakeholder workshop on post-marketing registries for rare diseases on 21 September 2023 (14.00 – 19.00 CEST) in Basel, Switzerland. The workshop will gather stakeholders active in the rare disease field to...