European parliament debate on the European Action Plan on Rare Diseases

On 24 November 2021; Members of the European Parliament (MEPs) discussed Europe’s Action Plan on rare diseases during a plenary session with Ms Stella Kyriakides, Commissioner for Health and Food Safety. MEPs expressed their support for a European Action Plan for Rare Diseases and called on the Commission to adopt it by 2023. During the debate, MEPs stressed the importance of harmonising EU policies on rare diseases, ensuring equal access to innovative treatment and care across Member States, securing access to affordable and effective drugs for patients, promoting the inclusion of rare disease patients into society as well as promoting awareness and education on rare diseases. MEPs also highlighted the importance of data collection and harmonisation across Member States.
The MEPs called on the Commission to implement the recommendations of the Rare 2030 foresight study as well as the recommendations of the Court of Auditors report of 2019 and to increase funds for the European Reference Networks.

The Commissioner for Health and Food Safety affirmed that the conclusions of the evaluation of the cross-border healthcare Directive in 2022, the evaluation of the Third Health Programme and the outcomes of the Rare 2030 pilot project will be discussed in a steering group by the end of 2022 and will, if appropriate, result in the revision of the EU policy framework for rare diseases in 2023. The Commissioner also stated that the commission is committed to continue to make improvements for the life of rare disease patients and families.

EURORDIS has issued a statement following the plenary session recalling that a European Action Plan for Rare Diseases would set out overarching objectives and priorities that would be beneficial to the rare disease community, allow a larger connection between research and innovation, increase the efficiency of national health systems and promote cross-border cooperation and social inclusion. The statement also calls for all stakeholders to engage directly with the President of the European Commission Ursula von der Leyen by sharing their reason for change, as part of their international campaign calling for the adoption of an EU Action Plan for Rare Diseases by the Commission.