About the forum
News - 22 July 2020
Vifor Pharma joins the Rare Disease Action Forum as Member
We are proud to welcome Vifor Pharma as the newest member of the Rare Disease Action Forum. We look forward to Vifor’s contribution to the collaborative efforts at the RDAF multi-stakeholder platform which consists of members from industry, patient organizations, healthcare professionals, and research organizations. Together we will continue our efforts to diagnosis, treatment and care for patients with rare diseases in Switzerland.
News - 25 June 2020
RDAF multi-stakeholder workshop “registries for rare diseases in Switzerland” – Report published
The Rare Disease Action Forum (RDAF) published the report about its multi-stakeholder workshop “registries for rare diseases in Switzerland”. The report highlights the key discussion points which were shared by expert presentations from patients, physicians and industry representatives on their experiences with establishing, maintaining and developing patient registries. It also summarizes ideas and proposal which were put forward by participants during the subsequent discussions on this topic. Amongst others, it was highlighted that while registries are highly beneficial for improving care of patients with rare diseases, they require constant development and face challenges in their requirement for sustainable personal resources and financing, as well as balancing data access rights and protections. To maximize benefits of registries, further engagement and cooperation to address harmonization of registry management, multi-sponsoring and national/international networking is required.