Cathal Crowe
Question:592. Deputy Cathal Crowe asked the Minister for Health if there will be a rare disease clinic at the new National Children’s Hospital. [2492/24]
View answerDáil Éireann Debate, Tuesday - 23 January 2024
592. Deputy Cathal Crowe asked the Minister for Health if there will be a rare disease clinic at the new National Children’s Hospital. [2492/24]
View answer594. Deputy Cathal Crowe asked the Minister for Health if he will confirm the locations of the centres of excellence identified in the 2016 Rare Disease Plan; and if he will make a statement on the matter. [2494/24]
View answerI propose to take Questions Nos. 592 and 594 together.
European Reference Networks (ERNs) of Centres of Expertise (CoEs) are virtual networks involving healthcare providers across Europe established in line with Article 12 of EC Directive 2011/24/EU (Cross-Border Care Directive). They aim to facilitate discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources.
In line with the recommendations from the National Rare Disease Plan (2014-2018), Ireland is currently a member of 18 of the 24 ERNs. These ERNs include representation from five academic hospitals (Children's Health Ireland, Beaumont Hospital, St. Vincent's University Hospital, Mater Misericordiae University Hospital, Tallaght University Hospital) and three universities and is coordinated by the National Rare Diseases Office. This represents a significant achievement by the health service, to drive innovation, training, and clinical research for highly specialised care. Through the European Reference Networks, the National Rare Disease Office (NRDO) is leading out on the development of optimal care pathways across a range of rare diseases.
The first ERNs were launched in 2017, involving more than 900 highly specialised healthcare units from over 300 hospitals in 26 EU countries. Following a call of interest in 2016 Ireland joined 3 ERNs as full members in 2017. A second call was opened in 2018 and invitations for Irish Centres of Expertise to join were sent to all HSE Group CEOs and Clinical Leads. A further 15 Irish consortia composed of at least 40 centres of expertise, led from 5 major academic HSE teaching hospitals, received full ERN approval in December 2021.
With ERNs, patients with rare and complex conditions will be able to benefit from the best treatment and advice available in the EU for their specific condition. Their doctors will have access to a highly specialised pool of colleagues from all over Europe. ERN coordinators convene virtual advisory panels of medical specialists across different disciplines, using a dedicated IT platform, Client Patient Management System (CPMS) and telemedicine tools.
Below is a full list of the ERNs that Ireland currently has membership of:
ERN BOND |
European Reference Network on bone disorders |
ERN CRANIO |
European Reference Network on craniofacial anomalies and ear, nose and throat (ENT) disorders |
Endo-ERN |
European Reference Network on endocrine conditions |
ERKNet |
European Reference Network on kidney diseases |
ERN-RND |
European Reference Network on neurological diseases |
ERN LUNG |
European Reference Network on respiratory diseases |
ERN Skin |
European Reference Network on skin disorders |
ERN EURACAN |
European Reference Network on adult cancers (solid tumours) |
ERN EuroBloodNet |
European Reference Network on haematological diseases |
ERN EURO-NMD |
European Reference Network on neuromuscular diseases |
ERN EYE |
European Reference Network on eye diseases |
ERN GUARD-HEART |
European Reference Network on diseases of the heart |
ERN ITHACA |
European Reference Network on congenital malformations and rare intellectual disability |
MetabERN |
European Reference Network on hereditary metabolic disorders |
ERN PaedCan |
European Reference Network on paediatric cancer (haemato-oncology) |
ERN RITA |
European Reference Network on immunodeficiency, autoinflammatory and autoimmune diseases |
ERN TRANSPLANT-CHILD |
European Reference Network on Transplantation in Children |
VASCERN |
European Reference Network on Multisystemic Vascular Diseases |
Children’s Health Ireland is a member of 5 ERNs. It is expected that membership of these ERNs will continue under the National Children’s Hospital.