Today Shayesteh Fürst-Ladani, CEO of SFL Group of Companies and President of the Rare Disease Action Forum (RDAF), opened the multi-stakeholder workshop on ‘Registries for rare diseases in Switzerland’, which gathered actors from patient organizations, industry, politician, research organizations, healthcare professionals and legal expert.
Ms. Fürst-Ladani said ‘I am glad that actors across the field of rare diseases accepted our invitation to take part in this multi-stakeholder event. Finding consensus for united actions is a prerequisite to achieve our common goal to improve the conditions for patients with rare diseases in Switzerland’.