Dáil Éireann Debate, Tuesday - 15 February 2022
695. Deputy Colm Burke asked the Minister for Health his views on the benefits of the participation of five Irish hospitals in the European Reference Network on Rare Diseases; if participation will help further national plans to support persons with rare diseases; and if he will make a statement on the matter. [7647/22]
View answerA ‘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.
It can be a challenge to provide highly specialised treatment or care for patients who have complex conditions. This is especially true when the prevalence of such conditions is low, as is the case for rare diseases. This challenge is due to both the scarcity of expertise and to the scattering of small patient populations across the EU, sometimes in isolated locations where expertise does not exist or cannot be accessed.
European Reference Networks (ERNs) are virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on complex and rare diseases that require highly specialised treatment and concentrated knowledge and resources. European Reference Networks (ERN) create a clear governance structure for knowledge sharing and care coordination across the EU to improve access to diagnosis and treatment, as well as the provision of high-quality healthcare for patients. They are networks of centres of expertise and healthcare providers that are organised across borders.
On Friday 26th November 2021, Ireland received formal notification from the European Commission (DG-Sante) that the 15 applications (involving a number of Centres of Expertise led from five academic hospitals) submitted to join the European Reference Networks were approved.
This is a significant achievement for the Irish Health Service with international approval/endorsement, to facilitate mobility of expertise, virtually or physically and develop and share information, knowledge and best practice and foster developments of the diagnosis and multidisciplinary treatment of rare diseases. Very importantly, this is also a very positive development for individuals and families affected with rare diseases for the enhanced cross border provision of highly specialised/rare disease services.
These 5 academic hubs will be pivotal to and drive innovation, training and clinical research for highly specialised care in collaboration with the established momentum of the ERN model which incorporates the most talented clinicians and investigators in the European Community.
