News - 14 June 2021
We are proud to welcome Morbus Wilson Schweiz as the newest member of the Rare Disease Action Forum. Reinforcing RDAF’s multi-stakeholder approach, they will be joining our other members including industry, patient organizations, healthcare professionals, and research organizations. We look forward to their contribution to the collaborative efforts at the RDAF multi-stakeholder platform. Together we will continue our efforts to improve access to diagnosis, treatment and care for patients with rare diseases in Switzerland.
News - 20 May 2021
The RDAF will host a virtual multi-stakeholder workshop dedicated to ‘Registries for rare diseases in Switzerland’ on 30 June, 2:00-5:00 pm (CEST). The workshop aims to discuss the Swiss Rare Disease Registry and disease specific registries and to define pathways to foster the development and synergies between them.
Experts in the field of rare diseases from patient organizations, industry, healthcare professionals and public authorities will share their perspective and engage in discussions about the opportunities and challenges for registries for rare diseases.