About the forum
News - 25 June 2020
RDAF multi-stakeholder workshop “registries for rare diseases in Switzerland” – Report published
The Rare Disease Action Forum (RDAF) published the 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.
News - 14 May 2020
RDAF attends the European conference on Rare Diseases
The RDAF is attending the 10th European Conference on Rare Diseases & Orphan Products (14-15 May 2020). We will connect online with patient representatives, policy makers, researchers, clinicians, industry representatives, payers and regulators at the patient-led rare disease conference, to discuss challenges in diagnosis, development and treatment for rare diseases that are core focus areas for the RDAF. The RDAF will also participate in sessions providing insights on the future of rare diseases, the promises of digital health and improving access and affordability.