Outcomes from the RDAF General Assembly and Multi-Stakeholder Workshop April 2020

20 Apr, 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.

Outcome of the RDAF 2023 General Assembly meeting

The Rare Disease Action Forum (RDAF) held its annual General Assembly meeting on 28 March 2023. During the meeting, the RDAF Secretariat presented an overview of the Association’s activities in 2022 and an outlook for 2023. The RDAF President underlined the progress...

13th International Rare Disease Day in Switzerland

The Rare Disease Action Forum supports the International Rare Disease Day, a globally coordinated movement that advocates for equal access to healthcare, treatments and diagnoses for patients with rare diseases, which takes place on 28 February. Watch the Rare Disease...