EURORDIS, together with the rare disease community launched the European Patient Advocacy Groups (ePAGs) to bring the patient voice to the heart of ERN activities. Each ePAG corresponds to one of the 24 ERNs, linking patient organisations with clinicians, experts, and researchers working on the same rare or complex diseases or highly specialised interventions.
ePAGs create a bridge between the ERN and the patient community. It makes sure ERN services respond to patients’ needs and expectations, and improve access to high-quality diagnosis, care, and treatment.
In Ireland, iPAGs (Irish Patient Advocacy Groups) are being established as part of a broader effort to connect with and support individuals and families affected by rare diseases. These groups are linked to the European Reference Networks (ERNs) and work to ensure patient voices are heard in policy and service development related to rare diseases.
