Objective

    The RDAF works towards an improved access to diagnosis, treatment and care for patients living with a rare disease in Switzerland. With this aim in mind, the RDAF liaises with experts and policy makers to better consider the specificities of rare diseases in the Swiss legislative framework as well as the procedures for the assessment of treatment options. The Working Group was created in 2019 to support the initiatives of the RDAF by discussing relevant topics and defining potential solutions and action steps in a multi-stakeholder approach.

    Activities

    The Working Group:

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    Evaluates key areas of rare disease related policies and regulations and develops positions on relevant topics e.g. the revision of the Ordinances on Compulsory Health Care and Health Benefits (KVV/KLV)

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    Engages in outreach activities towards public authorities, decision makers and other relevant stakeholders (such as insurers, medical examiners, industry associations and research organizations)

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    Supports the RDAF in its activities such as the organization of the multi-stakeholder workshops or other events

    An overview of the RDAF publications prepared by the Working Group can be found below. The full list of the RDAF publications is accessible on the publications page.

    21 November 2023

    RDAF statement on the KVV / KLV revision

    06 October 2021

    RDAF statement on the Federal Council report on rare diseases

    10 December 2020

    RDAF statement for the public consultation on he revision of the Federal Health Insurance Act concerning package 2 of the cost containment measures

    16 September 2022

    RDAF position statement on KVV/KLV revision

    19 March 2021

    RDAF statement for the public consultation on the adjustment of various ordinances which are needed to implement the revised Swiss Invalidity Insurance

    Organization

    The Working Group is composed of RDAF members and chaired by Anita Schnyder (Vertex, Chair) and Jasmin Barman-Aksözen (Porphyria, Vice-Chair).

    Anita Schnyder

    Vertex

    Anita Schnyder

    Vertex

    Working Group Chair

    Jasmin Barman-Aksözen

    Swiss Society for PorPhyria

    Jasmin Barman-Aksözen

    Swiss Society for PorPhyria

    Working Group Vice-Chair

    Thematic subgroups, composed of Working Group members, support the Working Group for the following activities:

    • Preparation of statements and consultation responses,
    • Dialogue with decision makers and key stakeholders in the field of rare diseases,
    • Preparation of the RDAF events.

    The Working Group set up the following thematic subgroups:

    • Analysis of the OLUtool NonOnko (Chair: Rea Lal, Pfizer)
    • Orphan drug pricing and reimbursement (Co-Chairs: Jasmin Barman-Aksözen, Swiss Society for Porphyria / Christina Müller, Roche)

    The mandate of the subgroup on the KVV/KLV revision, which prepared the RDAF position for the public consultation, recently ended. The RDAF Working Group will nonetheless continue to closely monitor developments related to the revision.