The RDAF Organizes a Multi-Stakeholder Workshop on Registries for Rare Diseases on 30 June 2021

    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.

    Continue reading

    Ipsen joins the Rare Disease Action Forum

    We are proud to welcome Ipsen 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....

    UCB Pharma and HOPOS join the Rare Disease Action Forum

    We are proud to welcome UCB Pharma and HOPOS as the newest members 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...