About the forum
The purpose of RDAF is to serve as a platform to exchange ideas and define actions to raise awareness of rare diseases and to improve access to treatment and patient care in Switzerland.
RDAF brings together experts from various stakeholders in the field of rare diseases.
News - 14 May 2020
RDAF attends the European conference on Rare Diseases
The RDAF is attending the 10th European Conference on Rare Diseases & Orphan Products (14-15 May 2020). We will connect online with patient representatives, policy makers, researchers, clinicians, industry representatives, payers and regulators at the patient-led rare disease conference, to discuss challenges in diagnosis, development and treatment for rare diseases that are core focus areas for the RDAF. The RDAF will also participate in sessions providing insights on the future of rare diseases, the promises of digital health and improving access and affordability.
News - 20 April 2020
Outcomes from the RDAF General Assembly and multi-stakeholder workshop April 2020
The RDAF General Assembly and the RDAF expert multi-stakeholder workshop on “registries for rare diseases in Switzerland” were held on 8 April 2020.
The General Assembly approved the Annual Report and elected the RDAF Board: Jacqueline de Sà (ProRaris), Shayesteh Fürst-Ladani (SFL Pharma), Reto Kessler (Vertex), Rea Lal (Pfizer), Elisabeth Minder (Porphyria), Robert Schupp (Santhera) and Andreas Uttenweiler (Takeda). Ms. Fürst-Ladani was confirmed as President. The elected Board will represent the RDAF 2020 members, comprising patient organizations, industry, professional healthcare organizations, and research organizations.
The 2019 Annual Report provided an outline of RDAF priorities and key events, including the launch of the RDAF working group on patient access and value assessment for orphan drugs, as well as an expert multi‑stakeholder workshop on “Article 71 KVV and OLUtool NonOnko in the field of rare diseases”.
The RDAF multi-stakeholder workshop on “registries for rare diseases in Switzerland” hosted expert presentations from patients, physicians and industry representatives, sharing their experience with set‑up and challenges of patient registries. The workshop concluded with a roundtable discussion on among other topics, the difficulties in patient enrolment, aspects of patients’ informed consent in the context of reimbursement and sustainable funding of registries for rare diseases in Switzerland.