Briefing 
 

Parliament to debate the EU’s approach to rare diseases 

On Wednesday, MEPs are set to call on the Commission to present an EU action plan on rare diseases by 2023.

MEPs are expected to recall that the EU‑funded Rare 2030 foresight study (February 2021) called for a new policy framework for rare diseases. A 2019 report by the Court of Auditors recommended that the Commission should assess whether the EU’s rare diseases strategy needs to be “updated, adapted or replaced by 2023”. This call was widely echoed by Parliament in its resolution of 10 July 2020 on the EU’s public health strategy post‑COVID‑19.

Recommendations for EU action on rare cancers are also likely to be made during the discussions, as MEPs are currently finalising the report of the Special Committee on Beating Cancer.

Background

Between 6 000 and 8 000 rare diseases affect an estimated 30 million people in the EU. A Council Recommendation on European action in the field of rare diseases dates back to 2009. In the field of research, a European Joint Programme on Rare Diseases was created in 2019. According to the 2022 Commission work plan, EU legislation on medicines for children and rare diseases will be revised by the end of next year.

Procedure: Questions for oral answer (S&D, Renew, ECR), without resolution

Debate: Wednesday, 24 November