Report of the RDAF Multi-Stakeholder Workshop on Registries for Rare Diseases

    14 Jul, 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.

    Continue reading

    RDAF hosts multi-stakeholder workshop on post-marketing registries

    The Rare Disease Action Forum (RDAF) will host a multi-stakeholder workshop on post-marketing registries for rare diseases on 21 September 2023 (14.00 – 19.00 CEST) in Basel, Switzerland. The workshop will gather stakeholders active in the rare disease field to...

    RDAF Newsletter

    We just released the first issue of the RDAF newsletter, which gives an overview of key policy developments and RDAF activities in the first half of the year. Highlights include: Overview of the latest policy developments relevant for the rare disease field...