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.

13th International Rare Disease Day in Switzerland

The Rare Disease Action Forum supports the International Rare Disease Day, a globally coordinated movement that advocates for equal access to healthcare, treatments and diagnoses for patients with rare diseases, which takes place on 28 February. Watch the Rare Disease...

The RDAF organizes a webinar on early diagnosis for rare diseases in Switzerland

The Rare Disease Action Forum (RDAF) will host a multi-stakeholder webinar on ‘Early diagnosis for rare diseases’ on 29 March 2023, 17.00-18.30 CET. The webinar focuses on the diagnosis of rare diseases in Switzerland, provides an overview of the related challenges,...