The European Economic and Social Committee (EESC) urges the EU to adopt a new approach to tackling rare diseases, pushing for better diagnosis, treatment and social support for patients
At a high-level conference in Budapest on November 29, 2024, the EESC presented its vision for a European Action Plan on Rare Diseases to improve healthcare outcomes and provide equal access to services for all patients, regardless of where they live in Europe.
Focusing on quick diagnosis and long-term care
The European Action Plan proposes that the EU ensure that rare disease patients receive a diagnosis within one year.
Currently, many patients experience long delays before they are correctly diagnosed, which can delay effective treatment. The EESC also calls for implementing neonatal screening programs and the long-term financial sustainability of the European Reference Network (ERN) for rare diseases.
The ERN enables cross-border healthcare for rare disease patients and is seen as a foundation of EU-wide cooperation on rare disease care.
Integration of healthcare and social services
The EESC emphasises the importance of integrating healthcare with social services to improve the overall quality of life for rare disease patients.
Many individuals with rare diseases also face significant social challenges, including difficulties in accessing disability recognition, social support, and inclusive services. By fostering greater collaboration between national governments, healthcare providers, and civil society organisations, the EESC hopes to create a more holistic support system that addresses both the medical and social needs of rare disease patients.
Strengthening society and patient organisations
Civil society and patient organisations play an important role in advocating for the needs of rare disease patients.
The EESC is working closely with these groups to make sure their voices are heard in the development of EU policies.
The conference shows the need for stronger collaboration at the EU level to promote a common rare disease policy with measurable objectives. This collaboration is seen as vital in fostering solidarity and ensuring that rare disease patients and their families receive the care and support they need.
Progress on the European Health Data Space (EHDS)
Another important area discussed at the conference was the European Health Data Space (EHDS), a new initiative to improve data sharing and interoperability across the EU. While progress is being made, the EESC highlighted that there are still many challenges, particularly in ensuring that health data is accessible and usable for both research and clinical purposes.
The committee calls on the European Commission to support projects that will facilitate data sharing between accredited medical teams and ERN members, helping to improve diagnosis and treatment for rare diseases.
Call for a European Action Plan by 2030
The EESC’s call for action includes establishing a European Action Plan on Rare Diseases by 2030. This plan would create a strategy for addressing the rare disease pathway in Europe, setting clear objectives and measurable outcomes. It would involve all relevant stakeholders, including patient organisations, researchers, healthcare providers, and national authorities, to work together toward a common goal.
The EU’s commitment and next steps
The conference conclusions will be presented at the European Council’s EPSCO meeting in December 2024, where the EESC hopes to gain further support for its proposed action plan.
The EESC believes that a unified EU approach to rare diseases will encourage better cooperation and ensure that patients have access to the diagnosis, treatment, and care they need, no matter where they live in Europe.
The EESC’s vision of a European Action Plan is a step toward creating a more inclusive and supportive environment for rare disease patients. By improving cooperation, the EU has the potential to significantly improve the lives of millions of people living with rare diseases.
