The Deputy may wish to note that I launched the National Rare Disease Strategy 2025-2030 on 27th August 2025. This landmark strategy sets out a vision to improve the lives of the estimated 300,000 people living with rare diseases in Ireland.
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's 11 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.
The National Rare Disease Office (NRDO) is the coordination hub for rare disease related activity within the Irish healthcare system. The NRDO provides information on the National Rare Disease Information Service, Care Pathways for rare diseases, ERNs, national social care supports, research projects and educational resources.
