Working together with Member States, the medical community and patient organisations, the Commission has taken a leading role to develop this unique ERN model: for the first time in healthcare, a formal structure of voluntary collaboration between healthcare providers across the EU has been created for the direct benefit of the patient.

Patient organisations

ERNs are about patients. Patient organisations and, in particular, EURORDIS, have played an active role in the development of eUROGEN, helping to ensure that the priorities will be to enhance clinical excellence and to improve patients’ health outcomes and equitable access to quality care across Europe. EURORDIS is a non-governmental patient-driven alliance representing 733 rare disease patient organisations in 64 countries. To check whether there is a patient organization in your country that might be able to help you, review this overview of all local patient organizations affiliated to eUROGEN.

Healthcare Providers

After an extensive assessment 29 health care providers in 11 Member States were admitted as centre of excellence within eUROGEN. These highly specialised centres will not only collection case reports to build knowledge, they also play an important role in the training of other healthcare providers via virtual multidisciplinary video consultation, live surgical masterclasses and visiting clinicians. Together with patients and patients representatives a strategic research agenda will be developed to stimulate innovative therapy programmes. Check out which healthcare centre in your country is a eUROGEN member.

European Commission and its Member States

Health systems in the European Union aim to provide high-quality, cost-effective care. This is particularly difficult with rare or low-prevalence complex diseases or conditions, because they require highly specialised treatment and concentrated knowledge and resources. By consolidating knowledge and expertise scattered across countries, ERNs will give healthcare providers access to a much larger pool of expertise. This will result in better chances for patients to receive an accurate diagnosis and advice on the best treatment for their specific condition.
EU Member States lead the ERN process: they are responsible for the recognition of centres at national level; they endorse the applications; and a Board of Member States is responsible for developing the EU ERN strategy and approving the networks. The Board is comprised of representatives of the 28 EU Members States and the EEA countries.
Other collaborations at EU level with a close link to the European Commission we have are with Orphanet, Eurocat and EUCERD Joint Action, the European Union Committee of experts on rare diseases.