Neasa Hourigan (Dublin Central, Green Party)
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801. To ask the Minister for Health if he will outline the current dedicated funding to support clinical leads in European Reference Networks on Rare Diseases in their engagement with European partners in the provision of services (outside of research funds, given the network is not a research network); and if he will make a statement on the matter. [24532/23]

Stephen Donnelly (Wicklow, Fianna Fail)
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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.

Ireland has membership to 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 Minister for Health has recently announced a plan to develop a revised National Rare Disease Plan, in line with the commitment in the Programme for Government. Initial work for the new plan has begun, and due consideration is being given to the required funding.

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.

The government has also substantially increased funding for new innovative medicines for rare diseases, investing €100 million over the last three Budgets. During this time, more than 100 new medicines have been approved, including 39 orphan medicines to treat rare diseases.

In 2023, the government has committed €2.7 million to support the implementation of the National Strategy for Accelerating Genetics and Genomics Medicine in Ireland. 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.