EESC Calls for European Action Plan on Rare Diseases to Improve Diagnosis and Treatment

EESC Calls for European Action Plan on Rare Diseases to Improve Diagnosis and Treatment

(IN BRIEF) The European Economic and Social Committee (EESC) has called for a comprehensive European Action Plan on Rare Diseases by 2030, urging the EU and Member States to enhance cooperation and ensure equal access to diagnosis and treatment. At a high-level conference in Budapest, experts stressed the need to diagnose rare diseases within one year, expand neonatal screening, and secure financial sustainability for European Reference Networks (ERNs). The event also emphasized integrating healthcare and social services, improving data sharing through the European Health Data Space, and fostering collaboration among civil society, patient organizations, and policymakers. The conclusions will be presented at the December 2024 EPSCO Council, advancing the goal of improved care and solidarity for rare disease patients across Europe.

(PRESS RELEASE) BRUSSELS, 2-Dec-2024 — /EuropaWire/ — The European Economic and Social Committee (EESC) hosted a high-level conference in Budapest, urging the European Commission and Member States to create a comprehensive European Action Plan on Rare Diseases by 2030. The plan aims to provide equal, affordable, and high-quality access to diagnosis and treatment, aligning with the principle of leaving no one behind.

The conference, titled For an EU Commitment to Tackling Rare Diseases, presented the EESC’s exploratory opinion, which highlights the need for measurable objectives and enhanced cooperation among civil society, patient organizations, healthcare providers, and policymakers.

The recommendations build on earlier EESC events and call for:

1. A Unified European Action Plan: To diagnose rare diseases within one year, expand neonatal screening programs, and ensure the financial sustainability of European Reference Networks (ERNs).
2. Strengthened Collaboration with Civil Society: To integrate healthcare and social services for rare disease patients, ensuring adequate support and independent living.
3. Improved Data Sharing through the European Health Data Space (EHDS): To develop a standardized methodology for interoperable data sharing among accredited medical teams and ERNs.

Expert Endorsements

Baiba Miltoviča, President of the EESC’s Section for Transport, Energy, Infrastructure, and the Information Society, emphasized the need for EU-wide collaboration to provide timely diagnoses and lifelong care for rare disease patients.

Ágnes Cser, rapporteur for the EESC opinion, noted the strong backing from the Hungarian Presidency and civil society, reaffirming the importance of solidarity for patients and their families.

Spanish Minister for Health, Mónica García Gómez, highlighted Spain’s commitment to reducing diagnosis times, expanding genetic testing, and addressing the social and emotional burdens faced by affected families.

Tomislav Sokol, Member of the European Parliament, called for a networked approach to rare disease policy, stressing the importance of collaboration and shared responsibility across Europe.

The conference conclusions will be presented at the EPSCO Council in December 2024, marking another step toward a more coordinated EU response to rare diseases. This initiative reflects the EESC’s dedication to improving the lives of rare disease patients and fostering European solidarity in healthcare.

Media Contact:

Ewa Haczyk-Plumley
Tel: +32 2 546 86 41
Mob: + 32 470 881 674
Ewa.Haczyk@eesc.europa.eu

SOURCE: European Economic and Social Committee