The National Rare Disease Strategy 2025 - 2030 sets out a vision to improve the lives of the estimated 300,000 people living with rare diseases in Ireland.
The Strategy was developed following engagement with a broad range of stakeholders, including patients and families affected by rare diseases. It outlines a comprehensive framework designed to enhance diagnosis, treatment, and support for people living with rare diseases, aiming to improve quality of life, promote equitable access to healthcare, and foster innovation in rare disease research and treatment.
The strategy contains a number of important recommendations to achieve its vision, including:
- Putting people with rare diseases at the centre of service design and delivery
- Establishment of an Implementation Oversight Group
- Expansion of the National Rare Diseases Office
- Establishment of a National Rare Disease Registry, to help improve the planning, coordination, and monitoring of services for people with rare diseases
- Increased international cooperation, particularly through the integration of European Reference Networks (ERNs) into the Irish healthcare service
- Improved care coordination Increased education and awareness of rare diseases among health professionals
The Strategy's recommendations also emphasise the importance of developing and enabling earlier diagnosis, integrated care, data and registries, research and innovation, and access to orphan medicines. By addressing these areas, the Strategy aims to create a more inclusive healthcare service that meets the complex needs of people living with rare diseases.
Link to access the National Rare Disease Strategy 2025 - 2030 (gov.ie).
