Kieran O'Donnell (Limerick City, Fine Gael)

I appreciate how difficult it is for Elizabeth, Leo and his family. Once again, I thank the Deputy for providing the opportunity to discuss this important matter. As previously stated, it is hoped that through the implementation of the recently launched national rare disease strategy, we can increase rare disease research opportunity in Ireland. Knowing that meaningful research is being undertaken offers hope for the future as well as possibly leading to treatment options.

By building on the work already undertaken through the rare disease clinical trial network, the rare diseases research and innovation catalyst award and through participation in the European Rare Disease Research Alliance, we can foster a cohesive research environment that responds to the needs of people living with rare diseases and clinicians.

Improved engagement, collaboration and partnership nationally and internationally will help to drive strong research innovation for all aspects associated with living with rare diseases. The established national rare disease research group has outlined that a new rare disease strategy will be an important step forward in providing a structured, co-ordinated, multi-actor and strategic approach to rare diseases research in Ireland.

I will bring the case of Elizabeth, and more particularly that of her son, Leo, to the attention of the Minister. I will put that in the context of the upcoming budget as well.

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