News - 14 July 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.
News - 30 June 2021
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.