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

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    Engages in outreach activities towards public authorities and other relevant stakeholders

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

    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.

    06 October 2021

    RDAF statement on the Federal Council report on rare diseases

    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

    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

    Organization

    The Working Group is composed of RDAF members and chaired by Rea Lal (Pfizer, Chair) and Andreas Uttenweiler (Takeda, Vice-Chair).

    Rea Lal

    Pfizer

    Rea Lal

    Pfizer

    Working Group Chair

    Andreas Uttenweiler

    Takeda

    Andreas Uttenweiler

    Takeda

    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.