Fourteen years ago in June 2012, the first meeting was held with the then Minister for Health, James Reilly, in Farmleigh House, when a whole lot of people involved in the area of rare diseases, including parents and different lobby groups, were brought together. That was the first that a serious effort was made to get everyone together in order to see how we could plan forward to deal with the many rare diseases that are there. Rare diseases may be individually uncommon but, together, they affect 300,000 people and their families across Ireland. Behind every diagnosis is a child, parent, carer or an adult who is living with a condition that often requires specialist treatment, ongoing support and access to innovative medicines. The publication of Ireland's National Rare Disease Strategy 2025-2030 was an important step forward. The strategy provides a roadmap for more integrated person-centred care and recognises the unique challenges faced by those living with rare diseases. However, for many families, progress on paper has yet to translate into improvements in daily life. Recent findings from Rare Diseases Ireland are concerning. Four in ten respondents reported poor access to healthcare services. More than 40% rated their physical health as poor, while over one third reported poor mental well-being. Nearly four in ten families described their financial situation as poor due to medical costs, travel expenses and reduced income arising from their condition. More strikingly, only a small minority expressed optimism that the new strategy will improve their quality of life. One area requiring urgent attention is access to orphan medicines. Currently, patients in Ireland wait, on average, more than 800 days between a medicine receiving market authorisation and becoming available to patients. This places Ireland among the poorest performers in the European Union and well behind the EU average. In 2018, I was involved in the health committee as regards producing a report on how we could speed up access to medicines. That report that has not been acted on. It is disappointing that some of the proposals set out in the report have not been followed through on. We must continue efforts to improve assessment processes, pricing negotiations and reimbursement pathways in order that effective treatments can reach patients more quickly. However, while these reforms are being pursued, we cannot ignore the immediate pressures facing families today. The National Rare Disease Strategy 2025-2030 rightly recognises that the costs associated with rare disease diagnosis should be considered in medical card assessments. It also highlights the need for integrated care pathways, co-ordinated community supports, special services, respite care, psychological supports and smoother transitions from childhood to adult healthcare. These commitments must now be implemented with urgency. Families should not have to wait years for access to treatment while also struggling with financial hardship, travel costs and fragmented services. Our responsibility is not only to improve access to orphan medicines but also to ensure that every person living with a rare disease receives the support they need to live with dignity and security. The strategy provides the framework; we must now deliver on the action. Going back to 2012, I was one of the only Oireachtas Members at the event in Farmleigh House. While a lot of progress has been made in 14 years, we need to expedite that progress in the next three to four years. We have medication in a lot of cases, but what is needed is access. It is important that we improve the process for making sure that the medication is available in a timely matter. I ask the Minister and the Department give priority to that matter. A lot of progress has been made. We need to make a lot more, but in a shorter timeframe.

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