The National Rare Disease Strategy Ireland 2025-2030

Abstract

The Minister for Health launched the National Rare Disease Strategy Ireland in August 2025. It is a high-level document. The stated aims are to enhance the diagnosis, treatment, and support for patients suffering from a rare disease. It is hoped that the strategy will lead to an improvement in the quality of life, equitable access to care across the healthcare system, and the development of new therapies through high quality research. The funding being provided this year is 5.6 million Euro this year, rising to 8 million Euro in 2026.

This strategy document builds on the work being undertaken by the National Rare Disease Office (NRDO). The NRDO was established by the HSE in 2015. It is based at the Mater hospital and it acts as a co-ordination hub. It provides specific disease information and the clinical expertise that is available. It provides social care supports and also has a role in research and development. Advocacy is another important function of the office. It manages the Irish section of Orphanet, the European portal on rare diseases information and orphan drugs. A Model of Care for rare diseases was subsequently published in 2019.