IMPROVING ACCESS TO DIAGNOSIS, TREAMENT AND CARE
    FOR PATIENTS WITH RARE DISEASES

    Our unique institutional set-up

    The RDAF is a multi-stakeholder, not-for-profit association established in Switzerland. The RDAF brings together actors in the field of rare diseases representing the industry, healthcare professionals, patient and research organizations. Our members are united by the common goal to improve access to the diagnosis, treatment and care for people living with rare diseases through dialogue with key stakeholders.

    Thanks to its unique institutional set-up, the RDAF provides a reliable and neutral platform to foster dialogue and define common solutions for action. Bringing together stakeholders is key to identifying the main challenges for access to diagnosis, treatment and care for patients with rare diseases, and defining actions to tackle those barriers and conveying our message in an efficient manner.

    Our governance

    General Assembly

    The General Assembly

    is the supreme governing body of the RDAF and is composed of all members. Decisions at a General Assembly meeting are taken by a majority vote of the members present.

    Board of Directors

    Board of Directors

    The Board of Directors is composed of at least three members who are elected once a year by the General Assembly.

    Secretariat

    Secretariat

    The Secretariat conducts the operational business of the RDAF under the supervision of the Board of Directors.

    Working Groups

    Working Groups

    The Working Groups contribute to shaping policy environment and the processes and tools for the regulatory framework and reimbursements of orphan drugs in order to improve patient access.

    Our history

    The RDAF was initiated by orphan drug companies in 2015 to serve as a neutral platform to engage stakeholders in the field of rare diseases. The association was founded in 2016 and its membership opened to non-industry actors the following year. In 2019, the RDAF created its first working group “Patient access and value assessment for orphan drugs” to support its work in this area. Today, the RDAF consists of members representing patient organizations, the pharmaceutical industry, healthcare and research organizations and physicians.

    2015
    2015

    First multi-stakeholder workshop

    2016
    2016

    Founding of RDAF as an association

    2017
    2017

    RDAF opened to non-industry members

    2018
    2018

    International event on value assessment

    2019
    2019

    Creation of the 1st Working Group

    2020
    2020

    RDAF reaches 24 members

    2021
    2021

    RDAF reaches 28 members and organizes its first webinar