Michael Lowry (Tipperary, Independent)
Link to this: Individually | In context | Oireachtas source

1383. To ask the Minister for Health the way that his Department is supporting the medical genetics service in Our Lady’s Children’s Hospital, Crumlin, as committed to in the programme for Government; and if he will make a statement on the matter. [16486/23]

Catherine Connolly (Galway West, Independent)
Link to this: Individually | In context | Oireachtas source

1397. To ask the Minister for Health his plans to allocate additional funding and resources to genetics services at Children’s Health Ireland, Crumlin, in order to reduce waiting lists; and if he will make a statement on the matter. [16536/23]

Paul Murphy (Dublin South West, RISE)
Link to this: Individually | In context | Oireachtas source

1437. To ask the Minister for Health if he will provide adequate resources for genetic services in Our Lady's Children's Hospital, Crumlin, in view of the fact that, currently, people living with a rare disease wait over two years for a diagnosis after a referral for genetic testing and can be treated for the wrong condition while they wait (details supplied); if he will ensure that waiting lists are dramatically reduced given that other health systems have a turnaround time of 12 weeks; his view that Ireland should set the same ambition; and if he will make a statement on the matter. [16714/23]

Patrick Costello (Dublin South Central, Green Party)
Link to this: Individually | In context | Oireachtas source

1441. To ask the Minister for Health if he will provide additional resources for genetic services in Our Lady's Children's Hospital, Crumlin; and if he will make a statement on the matter. [16737/23]

Neasa Hourigan (Dublin Central, Green Party)
Link to this: Individually | In context | Oireachtas source

1458. To ask the Minister for Health the progress that has been made on the Programme for Government commitment to support the medical genetics service in Our Lady’s Children Hospital, Crumlin; and if he will make a statement on the matter. [16793/23]

Cathal Crowe (Clare, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

1576. To ask the Minister for Health if he will provide an overview of the Government's commitment to support genetic services in Our Lady's Children's Hospital, Crumlin, to further enhance the Irish public health system's capacity to detect and diagnose rare diseases; and if he will make a statement on the matter. [17296/23]

Robert Troy (Longford-Westmeath, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

1582. To ask the Minister for Health his plans to increase accessible and timely access to genetic testing, and specifically to increase capacity and decrease wait times at the Department of Clinical Genetics of Our Lady's Children's Hospital, Crumlin. [17322/23]

Stephen Donnelly (Wicklow, Fianna Fail)
Link to this: Individually | In context | Oireachtas source

I propose to take Questions Nos. 1383, 1397, 1437, 1441, 1458, 1576, 1581 and 1582 together.

Improving and expanding the care and treatment of patients with rare diseases is a priority for Government. The government has substantially increased funding for new innovative medicines for rare diseases, investing €100 million over the last three Budgets. The Government is also fully committed to improving genetics services in Ireland, including at Children’s Health Ireland (CHI) at Crumlin.

One of the key ambitions 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, we 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.