Tackling rare diseases

Belgium (Brussels Morning Newspaper), The European Economic and Social Committee, and the European Commission are joining forces to deal with rare diseases at the European level.

They have launched a joint European initiative on rare diseases to integrate the European Reference Networks (ERNs) into national health systems.

The aim is also to build a common front to tackle the problem among EU institutions, European countries, civil society organizations, patient associations, scientists, practitioners, and hospital managers.

These were the objectives of the conference on rare diseases held in Brussels on 8 March.

The conference was organized by the European Economic and Social Committee in cooperation with the European Commission’s Directorate-General for Health and Food Safety (DG Sante).

EU health systems struggle to provide high-quality, cost-effective care when it comes to rare or low‑prevalence complex diseases that affect the daily lives of around 30 million Europeans.

That is why it is important, says the EC, to harness the potential of the European Reference Networks (ERNs).

These are the networks of healthcare providers across Europe that seek to facilitate discussion on complex or rare diseases and conditions that require highly specialized treatment and concentrated knowledge and resources.

Oliver Ropke, the EESC President, said, “Our key objective is to establish a comprehensive European action plan on rare diseases, setting out actions to be attained by 2030.

“We need to ensure that all rare disease patients in the EU have equal opportunities for diagnosis, treatment, and a holistic perspective of integrated care.

“The EESC is determined to continue to raise the awareness of the Joint Action and rare diseases in general and reach a wider community of stakeholders.”

He added, “We will ensure continuity in the work and political commitments of the member states and the EU institutions in the years to come.”