The Irish government has unveiled a new National Rare Disease Strategy for 2025–2030, a comprehensive policy framework designed to enhance outcomes for the estimated 300,000 individuals in Ireland living with rare diseases, reports 24brussels.
Launched by Minister for Health, Jennifer Carroll MacNeill TD, the strategy outlines 11 key recommendations aimed at improving diagnosis, treatment, and support services, while prioritizing patient experiences in healthcare delivery. This strategy builds on the previous National Rare Disease Plan (2014–2018) and incorporates international best practices, including insights from a review led by the Health Information and Quality Authority (HIQA) of global strategies for rare diseases.
Key measures include expanding the National Rare Diseases Office, creating a National Rare Disease Registry, and establishing an Implementation Oversight Group to monitor effective execution of the strategy.
Moreover, the strategy emphasizes enhanced care coordination, the integration of European Reference Networks (ERNs), and increased educational initiatives for healthcare professionals.
Jennifer Carroll MacNeill TD stated that the strategy “affirms our commitment to improving the lives of the one in 17 people in Ireland living with a rare disease,” and added that it is “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 but underscored the necessity of successful execution. “Implementation is critical,” she stated. “This will require leaders across the health system, including policymakers, healthcare professionals, patient advocates, researchers, and industry to collaborate effectively. Ensuring that all stakeholders are equal partners in delivery will be the key to success.”
Furthermore, McGrath called for stronger EU leadership in adopting emerging technologies, noting, “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.”
Evidence-based and collaborative
Professor Cecily Kelleher, Chair of the National Rare Disease Steering Group, characterized the strategy as “evidence-based” and “collaborative,” stressing that its success depends 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 explained.
Deputy Chief Medical Officer Professor Ellen Crushell remarked, “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’
Regarding the EU’s role, McGrath asserted that, “Europe can and should do more in areas like joint assessments, joint negotiations, and joint procurement to ensure that national healthcare systems can rapidly adopt innovative technologies that will benefit the citizens of Europe.”
She further questioned, “How can we be expected to contribute to life sciences innovation and iteration when our standard of care is based on obsolete technology? We should be delivering state-of-the-art care as standard.”
McGrath also called on the EU to formulate a dedicated Rare Disease Action Plan, stating, “The EU must establish a comprehensive Rare Disease Action Plan that places the patient voice at the very center of all policies, regulations, and directives.”
She emphasized the importance of patient representation, insisting that, “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.”
