Health Services

Tuesday, 23 January 2024

Questions (592, 594)

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 answer

594. 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 answer

Written answers

Minister for Health

I 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.