To mark 2025 Rare Disease Day, the European Parliament’s Committee on Public Health launched a consultation on rare diseases in the European Union on Friday 28 February (see EUROPE 13367/12).
The aim of this consultation is to provide a basis for the Committee on Public Health’s future work in the field of rare diseases by offering a better understanding and detailed knowledge of the challenges faced by those affected.
The online survey can be completed by all interested parties and is open for one month. Citizens, as well as stakeholders (patient associations, industry representatives, NGOs, etc.) have the opportunity to provide anonymous information on their expectations regarding future EU action in this area.
Parliament has always stressed the need for research into rare diseases and the development of medicines. In 2020, the European Parliament called for the creation of an EU action plan to combat rare diseases. The Committee on Public Health will now lead Parliament’s work on this issue, particularly in the context of pharmaceutical legislation’s reform and the forthcoming adoption of a European action plan on rare diseases.
Link to the consultation: https://aeur.eu/f/fp2 (Original version in French by Lionel Changeur)