Ireland approves National Rare Disease Strategy 2025–2030
The Irish Government has unveiled a new National Rare Disease Strategy 2025-30, covering around 300,000 patients in the country.
The document was developed by the Department of Health in collaboration with experts and patient organisations and includes 11 key recommendations.
The main areas of the strategy:
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Screening and diagnostics: expansion of the neonatal screening programme, implementation of the National Strategy for Genetics and Genomics, new diagnostic routes to shorten the ‘diagnostic odyssey’.
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Access and integration of care: integrated approach to routing, multidisciplinary care, smooth transition from children's to adult services, access to rehabilitation, palliative care and psychosocial support.
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Data and registries: creation of a National Registry of Rare Diseases based on ORPHAcodes, integration with electronic health records.
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International cooperation: full integration of Ireland into European reference networks, participation in joint EU initiatives.
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Science and Innovation: establishment of the National Rare Disease Research Group, development of clinical trials, participation in ERDERA, support for the Rare Disease Clinical Trial Network.
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Orphan Medicines: review of reimbursement procedures to ensure earlier access to new therapies; introduction of early access schemes for patients; expansion of Ireland's participation in international initiatives on joint health technology assessment and price negotiations; development of mechanisms for cooperation with other countries to increase accessibility and reduce the cost of innovative medicines.
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Education of specialists: inclusion of rare diseases in university curricula, development of short courses and micro-credentials, use of educational resources of European reference networks.
The National Rare Disease Office (NRDO), established in 2015, has been identified as the key coordinator:
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runs the National Rare Disease Information Service for patients, families and professionals;
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collects and publishes Irish data on Orphanet;
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develops and implements integrated models of care;
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acts as a focal point for national centres of expertise and European reference networks;
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ensures interaction with European and international initiatives.
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