Dáil Éireann Debate, Thursday - 30 March 2023
323. Deputy Bríd Smith asked the Minister for Health if he will acknowledge that approximately 300,000 people in Ireland are currently living with a rare disease; if he will provide adequate resources for genetic services in Our Lady’s Children’s Hospital, Crumlin; and if he will make a statement on the matter. [15963/23]
Amharc ar fhreagraOne of the key ambitions the National Strategy for Accelerating Genetics and Genomics Medicine in Ireland, launched in December 2022, is to build a strong national genetics service. This will be a patient and family-centred service that can be accessed equitably across the country and across the lifespan of patients. The Strategy outlines a plan to achieve this ambition by improving the evidence-base and infrastructure supporting genetic testing in Ireland. In 2023, the HSE will begin developing a National Testing Directory for genetics and genomics, which will map the current genetic tests conducted across Ireland and provide a more transparent process to referrals. This development, therefore, will be a key steppingstone to improving national genetic testing and ultimately help reduce wait time. The Strategy also outlines a plan to build a strong genetic workforce for the future. This will be achieved by not only recruiting new staff, but training and development for a future workforce, and professional development for current staff within the health service. To start implementing the Strategy in 2023 I approved €2.7 million including the appointment of key staff. These appointments included a National Director for Genetics and Genomics, a Bioinformatics Lab Director, two clinical genetic consultants and six genetic counsellors.
In addition to expanding a broad genetics and genomics service, I have also supported several key measures in rare diseases. My Department has worked with the National Rare Disease Office to facilitate Irish entry into 18 European Reference Networks (ERNs) for rare diseases and support an EU Joint Action for the integration of ERNs into the national system. These ERNs include representation from five academic hospitals and three universities. This represents a significant achievement by the health service, to drive innovation, training and clinical research for highly specialised care. The Department has also progressed Irish entry into Horizon Europe Partnerships on Rare Disease and Personalised Medicine. Participation in ERNs and Horizon Europe Partnerships ensure greater coordination and sharing of best practices in key areas such as genetic testing with European partners. Finally, I have recently announced a plan to develop a revised National Rare Disease Plan. This Plan will be a key step in progressing an improved overall service for individuals living with a rare disease.
