Dáil Éireann Debate, Wednesday - 10 May 2023
166. Deputy Duncan Smith asked the Minister for Health if he will provide a report on how Irish patients can access every European Reference Network for Rare Diseases; if Ireland is a full member of each ERN; if not, the steps that need to be taken to get access for Ireland to these networks; the timeline for these actions; and if he will make a statement on the matter. [21881/23]
View answerHealth systems in the European Union aim to provide high-quality, cost-effective care. This is particularly difficult however, in cases of rare or low-prevalence complex diseases which affect the daily lives of around 6% of the Irish population.
European Reference Networks (ERNs) 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.
Last year the HSE was nominated as the National Competent Authority in an EU Joint Action of European Reference Networks for Rare Diseases, which enables greater coordination and sharing of best practices in key areas such as genetic testing.
As a result of this collaboration, we have entered in 18 European Reference Networks (ERNs) on Rare Diseases out of 24. These ERNs include representation from five academic hospitals 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 Diseases Office 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, (ERN Blood-Net, ERN Skin and ERN VASCERN). 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 following external review by an EC DG-Sante appointed accreditation body (www.gov.ie/en/press-release/fb5a2-minister-donnelly-welcomes-approval-for-irish-hospitals-to-join-european-reference-networks-on-rare-diseases/).
If Ireland wishes to join the remaining 6 ERNs, the opportunity will arise with the next ERN call for applications where Irish Clinical Leads may apply as appropriate.
ERNs are not directly accessible to individual patients. However, with a patient's consent, a patient’s information can be referred to the relevant ERN member in their country by their healthcare provider. 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.
