RDAF 2022 General Assembly Meeting

21 Mar, 2022

On 21 March 2022, the Rare Disease Action Forum (RDAF) held its annual General Assembly meeting. An overview of the RDAF’s activities in 2021 and an outlook for 2022 were presented. The RDAF President welcomed the new members and underlined that the collaborative approach, which constitutes the core of the RDAF, is essential to identify barriers, raise awareness and work towards an improved framework for rare diseases.

The General Assembly elected the RDAF Board of Directors: Shayesteh Fürst-Ladani (SFL Pharma), Jasmin Barman-Aksözen (Swiss Society for Porphyria), Rea Lal (Pfizer), Bettina Nauli (Alexion), Jacqueline de Sá (ProRaris), Alessandro Strebel (Roche), Andreas Uttenweiler (Takeda) and Raffaella Willmann (FSRMM). Shayesteh Fürst-Ladani was re-elected as RDAF President.

RDAF hosts multi-stakeholder workshop on post-marketing registries

The Rare Disease Action Forum (RDAF) will host a multi-stakeholder workshop on post-marketing registries for rare diseases on 21 September 2023 (14.00 – 19.00 CEST) in Basel, Switzerland. The workshop will gather stakeholders active in the rare disease field to...

RDAF Newsletter

We just released the first issue of the RDAF newsletter, which gives an overview of key policy developments and RDAF activities in the first half of the year. Highlights include: Overview of the latest policy developments relevant for the rare disease field...