The RDAF publishes the report from its workshop on post-marketing registries

    8 Nov, 2023

    The report from the RDAF multi-stakeholder workshop on post-marketing registries for rare diseases, which took place on 21 September 2023 in Basel, is now available.

    The workshop fostered an inclusive dialogue between academia, healthcare professionals, industry, patient representatives and digital health organizations that helped develop a mutual understanding on the main challenges and debate on solutions for action. Attendees delved into a range of topics related to post marketing registries for rare diseases, including stakeholders’ role and involvement, goal definition, governance, funding and data collection and (re)use.

    Read the full report to find out more about the discussion outcomes.

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    RDAF hosts Swiss Rare Disease Summit on 26 November 2024

    The Rare Disease Action Forum (RDAF) will host the Swiss Rare Disease Summit on 26 November 2024 (9.30 – 17.30 CEST). The event will take place in Bern, with the additional option of virtual attendance. The Swiss Rare Disease Summit endeavors to forge a collective...