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Ireland’s National Rare Disease Strategy 2025-2030

The new National Rare Disease Strategy for Ireland was launched by Minister for Health, Jennifer Carroll MacNeill on 27th August 2025. This strategy is designed to support people living with rare diseases, their families, and the healthcare teams who care for them.
At the launch of the National Rare Disease Strategy with Minister for Health, Jennifer Carroll MacNeill L-R Ann Lawlor, 22Q11 Ireland; Alan Finglas, patient rep member Rare Disease Steering Group; Cecily Kelleher, Chair Rare Disease Steering Group; minister; Vicky McGrath, CEO Rare Diseases Ireland, member Rare Disease Steering Group; Gillian Stafford, patient rep member Rare Disease Steering Group; Laura Brady, CEO IPPOSI
The strategy aims to bring positive change by:
  • Making it easier for people to get an earlier and more accurate diagnosis.
  • Supporting access to better care, treatment, and services.
  • Strengthening research, knowledge, and expertise in rare diseases.
  • Ensuring that people and families have a stronger voice in the decisions that affect them.
This launch is about hope and progress. It is about recognising the courage of people living with rare diseases, the commitment of their families, and the dedication of healthcare professionals. Most of all, it is about building a fairer healthcare system where no one is left behind, no matter how rare their condition may be.
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