On 30 June 2021, the RDAF organized a multi-stakeholder workshop on Swiss registries for rare diseases. Actors from patient organizations, industry, politician, research organizations, healthcare professionals and legal expert shared their perspectives about the current status, opportunities and challenges for rare diseases registries.
Shayesteh Fürst-Ladani, President of the RDAF, said ‘I am glad that actors across the field of rare diseases accepted our invitation to take part in this multi-stakeholder event. Finding consensus for united actions is a prerequisite to achieve our common goal to improve the conditions for patients with rare diseases in Switzerland’.
The next RDAF workshop will take place in September. More information will be available on the RDAF website in due time.