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.