Alan Dillon (Mayo, Fine Gael)
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1550. To ask the Minister for Health the status of an updated national rare disease plan as committed to in the programme for Government; and if he will make a statement on the matter. [1712/23]

Stephen Donnelly (Wicklow, Fianna Fail)
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Many of the recommendations of the National Rare Disease Plan for Ireland (2014 – 2018) have already been implemented including the establishment of a National Rare Disease Office (NRDO) and HSE National Clinical Programme for Rare Diseases which has now been operationalised and incorporated into the NRDO which is the main contact point and driver for National HSE rare disease projects and initiatives.

The National Rare Disease Plan elaborates on Ireland’s participation in European Reference Networks (ERN). ERNs are virtual networks involving healthcare providers across Europe where the networking of knowledge and expertise through reference centres and teams of experts takes place. These links are emphasized in the Plan to address the care of patients with rare diseases at both National and European levels. Significant progress has been made with regard to participation in ERNs with Ireland’s 15 applications for entry to ERNs recently being approved from 5 academic hospitals. Entry to these networks commenced on 1 January 2022 and represents a significant achievement for the Irish Health Service which will drive innovation, training and clinical research for highly specialised care. It is also a very positive development for individuals and families affected with rare diseases.

The National Rare Disease Office (NRDO) under the governance of HSE Acute Operations is currently leading out on the development of 30 of the more common rare diseases across 18 European Reference Networks. A primary objective of this project is to develop an optimal process (methodology and care pathway model) for the introduction of national rare disease care pathways into the Irish healthcare system in the absence of a commonly recognised best practice methodology. The NRDO is working in collaboration with ERN Clinical Leads, patient organisations, and a wider multi-disciplinary stakeholder group to develop a template model and content of each care pathway.

My Department is seeking to appoint, through the usual recruitment channels, an official to progress the commitment in the Programme for Government to bring forward a new National Rare Disease Plan.