Fostering dialogue and united actions in the field of rare diseases

    The RDAF enables dialogue with key stakeholders in the field of rare diseases, including patients, physicians, the pharmaceutical industry, public authorities, and payors. Since 2015, the RDAF regularly organizes and moderates multi-stakeholder workshops in order to identify pathways for improvement and define action steps.

    These multi-stakeholder workshops gather experts in the field of rare diseases to present the latest developments as well as engage in in-depth roundtable discussions. Participants are provided with opportunities to interact and discuss the challenges and identify potential areas for actions. The RDAF organizes follow-up initiatives to build on the outcome of these discussions.

    The workshops focus on key topics for improving access to diagnosis, treatment and care for patients with rare diseases, such as:

    Value assessment for orphan drugs

    Access to diagnosis

    Registries for rare diseases

    Access to diagnosis

    Access to therapies

     Reference centers and international cooperation

    You can find the report from the RDAF most recent workshop here.

    In March 2021, RDAF organized a webinar on rare diseases in Switzerland. Guest speakers included representatives from the pharmaceutical industry, healthcare professionals and experts on regulatory affairs. The report on the webinar can be found here.