Press release
Minister Donnelly welcomes approval for Irish hospitals to join European Reference Networks on rare diseases
From Department of Health
Published on
Last updated on
From Department of Health
Published on
Last updated on
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.
The five academic hospitals joining ERNs are Beaumont Hospital, Children’s Health Ireland, Mater Hospital, St. Vincent's University Hospital, and Tallaght University Hospital.
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."
ERN are networks for clinicians and researchers to share expertise, knowledge and resources across the EU on rare diseases. There are 24 ERNs working on a range of thematic issues including bone disorders, childhood cancer and immunodeficiency. The first ERNs were launched in March 2017, involving more than 900 highly specialised healthcare units from over 300 hospitals in 26 EU countries. ERNs are part of the legal framework of the EU Directive on Patients' Rights in Cross-Border Healthcare Directive adopted in 2011.
Five Irish academic hospitals have been approved to join the following 15 ERNs:
| ERN | Hospital | |
| Endo-ERN (endocrine conditions) | Beaumont Hospital | |
| ERKNet (kidney diseases) | Beaumont Hospital | |
| EURO-NMD (neuromuscular diseases) | Beaumont Hospital | |
| MetabERN (hereditary metabolic disorders) | Children’s Health Ireland | |
| ITHACA (congenital malformations and rare intellectual disability) | Children’s Health Ireland | |
| PaedCan (paediatric cancer) | Children’s Health Ireland | |
| CRANIO (craniofacial anomalies and ear, nose and throat (ENT) disorders) | Children’s Health Ireland | |
| TRANSPLANTCHILD (conditions and complications linked to the transplantation in children) | Children’s Health Ireland | |
| ERN-EYE (eye diseases) | Mater Misericordiae University Hospital | |
| GUARD-HEART (diseases of the heart) | Mater Misericordiae University Hospital | |
| EURACAN (adult cancers - solid tumours) | St. Vincent's University Hospital | |
| ERN-LUNG (respiratory diseases) | St. Vincent's University Hospital | |
| BOND (bone disorders) | St. Vincent’s University Hospital and Children’s Health Ireland | |
| ERN-RND (neurological diseases) | Tallaght University Hospital | |
| RITA (immunodeficiency, autoinflammatory and autoimmune diseases) | Tallaght University Hospital |
For more information visit: https://ec.europa.eu/health/european-reference-networks/work-erns_en
A ‘rare disease’ is defined in Europe as a life-threatening or chronically debilitating disease affecting no more than 5 people per 10,000. There are an estimated 6-8,000 known rare diseases affecting up to 6% of the total EU population, (at least 30 million Europeans), and perhaps up to 300,000 Irish people during their lives.