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