Hildegarde Naughton (Galway West, Fine Gael) | Oireachtas source

I thank all the Deputies who participated in the debate for their interest and contributions on this important topic. Many rare conditions are both severe and complex and patients can face multiple challenges, including difficulties accessing appropriate medication.

The development of a successor to the previous national rare disease plan is a key priority for the Department of Health in order to enhance care and treatment for the estimated 300,000 people living with a rare disease in Ireland. The rare disease steering group has been tasked with developing a new national rare disease plan for Ireland that sets out the vision for rare disease services and the actions we must take in order to make this vision a reality. The development of this strategy will be informed by contributions from the new patient forum, which puts the voices of patients and families at the centre of policy-making. It is vital that the views and experiences of those affected by rare diseases are central to the work we do. As previously stated, the development of a new strategy will allow us to consider areas of the previous plan that need to be further progressed, while also looking to the future and responding to the needs of patients.

It was evident that there has been an increased focus on rare diseases in recent years, which is welcome. The events that took place across the country during Rare Disease Day last week highlight the tireless work of patients, advocacy groups and the public in increasing our awareness of rare diseases. It also highlighted that while rare individually, collectively, rare diseases are much more common than many of us may think, affecting an estimated 6% of our population. The development of the new national rare disease plan, due to be published later this year, marks a renewed focus on rare diseases and fulfils the commitment made in the programme for Government. It is hoped that this new strategy and its implementation will address gaps in rare disease services and ensure patients and their families receive the right care, at the right time, in the right place.

Once again, I thank all the Deputies who participated in the debate today and assure them the Government is fully committed to doing everything possible to reduce the impact of rare diseases and improve services and treatments for people living with a rare disease diagnosis in Ireland.

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