The National Rare Disease Strategy Implementation Oversight Group Is Seeking Two Members With Lived Experience

The Minister for Health has  launched the new National Rare Disease Strategy 2025-2030, aswell as an Implementation Oversight Group (IOG).

As part of the implementation phase of the National Rare Disease Strategy 2025-2030, an Implementation Oversight Group (IOG) is being established to provide strategic guidance and monitor progress at a national level.

This Expression of Interest Form invites interest from those who are interested in the future of rare disease services in Ireland through contributing to the work of the IOG, and who have experience accessing these services, live with or care for someone with a rare disease, or are interested in contributing in a tangible way to the development and implementation of more trusted, and more efficient, relevant rare disease services and research in Ireland.

On this form, you will be asked to share some of your personal experiences with health services for people living with rare diseases, to outline your suitability for the role. Your responses will be recorded and taken into consideration in line with the expectations of the role.*

It is expected that the lived experience representatives will be required to attend quarterly meetings of the Implementation Oversight Group. These may be held online or in-person in Dublin city centre. The first meeting is planned for early February.

Muscular Dystrophy Ireland CEO Alan Breathnach has stated that “the organisation [MDI] warmly welcomes the launch of the National Rare Disease Strategy 2025–2030, He noted that for individuals and families affected by neuromuscular conditions, the Strategy represents a significant opportunity to improve access to coordinated health and social care services.

Mr Breathnach continued that he “particularly welcomed the strong emphasis on lived experience and patient partnership through the Implementation Oversight Group and Patient Reference Group, highlighting that meaningful engagement is essential to ensuring real and lasting improvements.”

Lastly, he “encouraged members of the neuromuscular community to consider participating in the implementation process and reaffirmed Muscular Dystrophy Ireland’s commitment to working with the Department of Health and the HSE to ensure the Strategy delivers tangible outcomes for people living with rare diseases.”

The expression of interest form is at this link, and should be completed and returned to rarediseasestrategy@health.gov.ie  by 12 noon on Monday 26 January.

If you have any difficulty completing the form, please contact rarediseasestrategy@health.gov.ie.