Ireland Seeks Patient Perspectives for Rare Disease Strategy Oversight
Ireland's Department of Health is actively seeking individuals with lived experience of rare diseases to join a new oversight body. This initiative is particularly significant for the Inherited Retinal Disease (IRD) community, as it underscores a commitment to integrating patient perspectives into the strategic planning and implementation of healthcare services for rare conditions. For those living with IRDs and their families, this represents a crucial opportunity to directly influence policies that could impact diagnosis, treatment access, and support systems.
According to a report published on January 29, 2026, by euractiv.com, Ireland's health department has opened expressions of interest for individuals to join an Implementation Oversight Group (IOG) for the National Rare Disease Strategy 2025-2030. This strategy, which was launched by the Minister for Health on August 27, 2025, aims to improve access to "equitable, inclusive and cross-sectoral care" for the estimated hundreds of thousands of people in Ireland affected by rare conditions. The IOG will be co-chaired by senior officials from the Department of Health and the Health Service Executive and will be responsible for providing strategic direction and monitoring national progress in delivering the strategy.
A core element of this initiative is the integration of patient perspectives into decision-making, reflecting a broader shift within the health system towards formalized patient and public involvement. Two members of the Implementation Oversight Group will be selected specifically based on their "lived experience" of rare diseases, either directly as a patient or as a carer. The department is inviting interest from people with experience accessing rare disease services in Ireland, including patients, carers, and those engaged with research or service development.
For patients and families within the IRD community, this call for patient voices means a direct pathway to ensure their unique challenges and needs are heard at the highest levels of healthcare planning. The National Rare Disease Strategy 2025-2030 outlines a comprehensive framework designed to enhance diagnosis, treatment, and support, aiming to improve quality of life and promote equitable access to healthcare. Key recommendations within the strategy include putting people with rare diseases at the center of service design and delivery, establishing a National Rare Disease Registry, and increasing international cooperation. The strategy also emphasizes developing and enabling earlier diagnosis, integrated care, data and registries, research and innovation, and access to orphan medicines. This direct involvement can help ensure that the specific needs of IRD patients, such as access to specialized genetic testing, low vision services, and emerging gene therapies, are adequately addressed within the national framework.
This move by Ireland's Department of Health highlights a growing recognition of the invaluable insights that patients and their families bring to healthcare policy. Their direct experiences are crucial in shaping a strategy that is truly responsive and effective. The inclusion of patient representatives on the Implementation Oversight Group is a positive step towards ensuring that the National Rare Disease Strategy 2025-2030 will genuinely transform the lives of those living with rare conditions in Ireland.