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Approval for Irish Hospitals to Join European Reference Networks on Rare Diseases

Minister for Health Stephen Donnelly has welcomed formal notification from the European Commission that 15 applications (mainly consortia) submitted by five Irish academic hospitals to join European Reference Networks have been approved.

European Reference Networks (ERNs) are virtual networks for clinicians and researchers across the EU to share expertise, knowledge and resources on rare diseases. ERNs convene virtual advisory panels of medical specialists across different disciplines, using a dedicated IT platform and telemedicine tools, to review a patient with a rare disease’s diagnosis and treatment.

Minister Donnelly said, “access to these networks for our healthcare workers, enabling them to engage with their peers across the EU on best practice in the treatment of rare diseases, is a significant development for healthcare in Ireland. These networks help foster developments in the diagnosis and multidisciplinary treatment of rare diseases including kidney diseases, neuromuscular diseases, paediatric and adult cancers, and immunodeficiency, autoinflammatory and autoimmune diseases.”

“Most importantly, this is a very positive development for individuals and families affected by rare diseases in Ireland. Rare disease patients will be able to benefit from improved care and access to treatment, embodying the Sláintecare principles of right care, right place, right time.”


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