On 28 February 2025, the recently established Committee on Public Health (SANT) of the European Parliament launched a public consultation on rare diseases.
This survey is an opportunity to raise public awareness about the condition of patients with rare diseases in Europe. It is also essential for advocating continued funding and the recognition of ERNs, whose sustainability remains at stake.
The purpose of this public consultation is to provide a basis for the forthcoming work of the Committee in bringing a better understanding and detailed knowledge of the challenges faced by persons affected by rare diseases as well as the views of persons working with or involved in rare diseases.
The online survey is open to all interested parties and will be available until 31 March 2025.