Dáil Éireann Debate, Tuesday - 18 April 2023
1402. Deputy Steven Matthews asked the Minister for Health if his attention has been drawn to a campaign (details supplied); the actions he is taking to address the concerns raised in relation to the diagnosis of rare conditions amongst others; and if he will make a statement on the matter. [16548/23]
View answerMy Department is fully aware of the Get Rare Aware campaign and the findings from Rare Disease Ireland’s research report, Rare Reality: Living with a Rare Disease in Ireland informing this campaign. We have received and responded to several letters and questions related to this campaign over the past weeks. The Government and I are committed to supporting Rare Diseases in Ireland, as outlined in the Programme for Government. We are supportive of the campaign’s call to expand genetic services in Ireland and have taken several important steps to help progress this ambition.
A core objective of 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. In line with the principles of Sláintecare, it will continue to support the enhancement of genetic services across the Regional Health Areas (RHAs). This service will be supported by a National Office for Genetics and Genomics, who will work with RHAs to ensure the effective delivery of a national service at a local level.
The Strategy also 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. The government has substantially increased funding for new innovative medicines for rare diseases, investing €100 million over the last three Budgets. 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.
