The Irish government has published a new National Rare Disease Strategy 2025–2030, its comprehensive policy framework aimed at improving outcomes for the estimated 300,000 people living with rare diseases across the country.
The strategy, launched by Minister for Health, Jennifer Carroll MacNeill TD, outlines 11 key recommendations to enhance diagnosis, treatment, and support services, while embedding patient experience at the heart of healthcare delivery. It builds on the previous National Rare Disease Plan (2014–2018) and incorporates international best practices, including findings from a HIQA-led review of global rare disease strategies.
Among the headline measures are the expansion of the National Rare Diseases Office, the creation of a National Rare Disease Registry, and the establishment of an Implementation Oversight Group to ensure delivery.
The strategy also calls for improved care coordination, integration of European Reference Networks (ERNs), and increased education among healthcare professionals.
Jennifer Carroll MacNeill TD said the strategy “affirms our commitment to improving the lives of the one in 17 people in Ireland living with a rare disease,” adding that it was “designed not just to meet their needs, but to enable better health outcomes through earlier diagnosis, optimal care and support right throughout the life course.”
She also announced the formation of a new ‘People Living With Rare Diseases Partnership Advisory Group’.
Innovation leadership needed
Vicky McGrath, CEO of Rare Diseases Ireland, welcomed the strategy’s publication but emphasised the importance of execution.
“Implementation is critical,” she told Euractiv, “This will require leaders across the health system, including policy makers, healthcare professionals, patient advocates, researchers and industry to work together. Ensuring that all stakeholders are equal partners in delivery will be the key to success.”
McGrath also called for stronger EU leadership in the adoption of emerging technologies.
“The EU must demonstrate leadership in the area of innovation adoption. The pace of advancing technology (AI, genomics, cell & gene therapies) makes it difficult and almost impossible for the healthcare system to keep up,” she added.
Evidence-base and collaborative
Professor Cecily Kelleher, Chair of the National Rare Disease Steering Group, described the strategy as “evidence-based” and “collaborative,” noting that its success hinges on robust implementation. “This is why the cornerstone of the next phase is the establishment of an Implementation Oversight Group, which the Steering Group has recommended to the Minister,” she said.
Deputy Chief Medical Officer Professor Ellen Crushell added: “Crucially, the impact of this Strategy will depend on its effective and sustained implementation over the next five years, ensuring that the commitments contained within are translated into real and meaningful action.”
‘Stand-up for innovation’
When it comes to the EU’s role, McGrath said, “Europe can and should do more in areas like joint assessments, joint negotiation and joint procurement to ensure that national healthcare systems can rapidly stand-up innovative technologies that will deliver for the citizens of Europe.”
“How can we be expected to contribute to life sciences innovation and iteration when our standard of care is based on obsolete tech? We should be delivering state-of-the-art care as standard,” she added.
McGrath also urged the EU to establish a dedicated Rare Disease Action Plan.
She said, “The EU must establish a comprehensive Rare Disease Action Plan that puts the patient voice at the very centre of all policies, regulations and directives.”
McGrath called on the EU to demonstrate leadership both on the global stage and with national governments in this regard. She said, “It is not acceptable for patients not to have a seat at the table with the same voting rights and level of oversight and influence as all other stakeholders.”
(VA)
