I thank Deputy O'Sullivan for his important question. We have about 300,000 people in Ireland who are living with rare diseases - about one in seven of the population - which is very significant. We have made commitments in the programme for Government and we are working with the Minister for Health, Deputy Carroll MacNeill, whom I know is very committed in this area. One of the critical areas we are working on is access to new medicines. That is why, later this year, we will bring forward a life science strategy which, in partnership with the Department of Health and my Department, will work to ensure access to rare medicines and incentivise innovation. We have many life science companies in operation in Ireland, employing over 100,000 people, which are advancing the most clinically innovative drugs. It is critical we get access to those drugs for our population, particularly the cohort the Deputy mentioned. There is a mechanism for approval of rare drugs and resources have increased significantly to the Health Products Regulatory Authority, HPRA, to ensure we get better at approving these key medicines that are so important for society, children and families. As the Deputy rightly pointed out, there is family who are very much suffering because of that. I know Senator Maria Byrne and my Fine Gael colleagues do a huge amount of work with the rare diseases group here in the Oireachtas, and they are very interested in progressing it. I look forward to working with the Deputy in this regard. I will relay the issues he raised to the Minister for Health.

Sentiment score: 0.24

I will raise this issue with the Minister of Health. As the Deputy pointed out, she is committed and has been meeting families on this. In budgets between 2021 and 2025, an additional €158 million was made available for new drugs and of the 263 new drugs, 72 were new drugs that were licensed in that regard. We also have the rare diseases strategy from 2025 to 2030, which the Government is working on to ensure we breathe life into its recommendations to support the families the Deputy referenced. That is what the Government is achieving. I will work with the Minister for Health and raise the concerns the Deputy has brought to the House this afternoon.

Sentiment score: 0.15