ProRaris successfully collected 459 signatures for its petition regarding the Swiss participation to the European Reference Networks (ERNs). The petition, also supported by the Rare Disease Action Forum (RDAF), asks for Swiss authorities to take urgent actions to enable participation of Swiss healthcare providers and reference centers for rare diseases in the ERNs. Swiss healthcare providers are currently unable to be part of the ERNs due to the prevailing political situation. The petition was submitted to the authorities on 23 August 2017.
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...