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.

    To this end, the RDAF frequently gathers actors active in the rare disease area in Switzerland to exchange perspectives and experiences on key issues and discuss solutions to address the identified hurdles. Our events are open to all interested parties.

    Multi-stakeholder workshops and events

    Since 2015, the RDAF regularly organizes and moderates multi-stakeholder workshops in order to identify pathways for improvement and define action steps.

    The table below provides an overview of topics covered during past RDAF workshops. In the second half of 2023, the RDAF will host a multi-stakeholder workshop dedicated to post-marketing registries for rare diseases.

    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.

    The RDAF also regularly organizes multi-stakeholder webinars. In March 2023, the RDAF hosted a webinar on the topic of early diagnosis for rare diseases. Speakers from a patient organization, a rare disease reference network and a health insurer presented perspectives and exchanged with the audience on the hurdles and potential avenues to accelerate access to diagnosis in Switzerland.

    Upcoming events

    • Workshop on post-marketing registries for rare diseases (21 September 2023, in person, German)
      The event will gather stakeholders from the rare disease field to discuss principles for the set up and management of these registries, including to foster the involvement of patients and healthcare providers. Further information on the event will be released at a later date.