On my own behalf and that of the Regional Group, I echo the condemnation of the attack on the young man that took place in County Meath. I wish him a speedy recovery.

Deputies were yesterday told of the perverse situation whereby doctors are sitting in front of computers and inputting numbers instead of providing vital care to patients with rare diseases. That is, sadly, a practice that is far too common within our health services. While most rare diseases appear early in life, with about 30% of children affected not reaching their fifth birthday, many are not diagnosed until adulthood. Despite the phrase, rare diseases are not rare. In Ireland, about one in 12 people are, or at some stage in their lives will be, affected by such a condition. This means that approximately 825,000 Irish people are impacted by a rare disease when family members, many of whom are carers, are included. The west and north-west of Ireland have one of the highest incidence rates in Europe.

Even when patients get a diagnosis, up to one third of people living with rare diseases have indicated they do not have access to expert medical care here in Ireland. The expertise does not exist in Ireland for many of these conditions because of the rarity of the disease. To overcome this, the EU cross-border directive mandated the establishment of European reference networks, ERNs, to link rare disease clinical expertise across the EU. The main goal is to bring that expertise to patients in their home countries rather than requiring them to travel abroad. Twenty-four reference networks for a broad range of rare diseases have been established at EU level and, to date, Ireland has a clinical lead representative in 18 of those. We must constantly update patients' medical records on this EU network or else Irish patients' access to the most up-to-date medical care for their condition will be withdrawn. Sadly, there are still patients who cannot access this expert care because their medical information still needs to be uploaded onto this vital EU-wide network. It also leaves Irish patients, whose conditions are covered by the six EU rare disease networks in which Ireland is not participating, excluded from accessing the best available medical care.

To address this, we need a health data system and staff who can upload patient information onto the EU reporting and audit network, thus ensuring Ireland's membership can be maintained and built upon to benefit all patients with rare diseases, regardless of which hospital they attend in this country. I am asking that we stop pulling consultants away from treating the patients with some of the rarest medical conditions in the world to sit in front of a computer filling out online forms and instead employ skilled administrative staff to do this on an integrated patient data system across our health service, saving time, money and, most importantly, people's lives.

I thank the Deputy for raising this issue, which has been an issue of interest to me for quite some time. Deputy Pádraig O'Sullivan of Fianna Fáil has also been a strong advocate in this area. I welcome the participation by Ireland in 18 of the 24 ERNs. By definition, rare diseases have never been amenable to pharmaceutical investment, or the State could never invest in treatment or medicines, because the volume involved would never be sufficient to match the investment required for research into the treatment for such conditions. There is a multiplicity of rare conditions. The ERN is an excellent idea. It allows the pooling together of expertise and knowledge to bring to the patient as quickly as possible. The issue now is to adequately fund our participation in these ERNs. I have spoken with the Minister for Health about this and it is my view that the Government needs to respond to the Estimates bid that has been made. There is a bid in for approximately 37 whole-time equivalents across five ERN leading sites. We must begin to build up capacity. The Deputy has made a coherent case and we have to move on this because it is a practical way to give real opportunities. The journey for patients can be quite shocking and long, involving multiple trips to different clinicians. Patients may originally think their issues are respiratory or whatever else, so there can be a long journey before patients and their families land on a person who knows the issue and who knows what he or she is talking about. The reference network offers enormous potential. We need to resource our participation, and I take that point. As I said, I have spoken to the Minister about the issue.

Parallel to that, the Horizon Europe programme has commissioned significant research into treatments for rare diseases, which is also vital. In some instances, the market is not going to come up with the answers and collectively, the European state, or rather, the European Union - do not all panic - collectively should come together and give significant funding through the Horizon Europe research programme to respond to significant rare conditions. We have, for example, long sought co-operation with the United States and other countries to focus on research around cystic fibrosis, which is a particular condition in Ireland but is globally rare. That is a good illustration of the approach we require from a research point of view and from the network point of view.

I thank the Tánaiste for his response. Our lack of an integrated medical data system, and the staffing to manage it, denies patients with rare diseases in Ireland access to the best possible and most cost-effective medical care in the world today.

This failure to develop and staff a proper medical data system will also exclude Irish people from fully utilising the new EU health data space which is being designed to provide patients with access to new and innovative treatments for cancer and other common diseases that cannot be cured today. Why should Irish patients be denied access to life-saving treatments because the computer in one hospital cannot talk to the other or that the computer in Ireland cannot talk to the computer in Germany or France? We are a global digital leader. Let us ensure that our health service plays its part to benefit all of our patients.

In respect of treatment, the Government has substantially increased funding for new innovative medicines for rare diseases, investing €100 million over the last three budgets. More than 100 new medicines have been approved, including 39 orphan medicines to treat rare diseases. We also committed €2.7 million to support the implementation of the national strategy for accelerating genetics and genomic medicine in Ireland. As I stated earlier, we progressed Irish entry into the Horizon Europe partnerships on rare diseases and personalised medicine. As I said, both those tracks - research and participation in the networks - are key, as is the implementation of the strategy on accelerating genetics and genomic medicine. A new national office of genetics and genomics and the appointment of key staff will all be provided for with a national director for genetics and genomics, a bioinformatics laboratory, a director, two clinical genetic consultants and six genetic counsellors. That has been welcomed by the rare disease community in Ireland and will be of benefit to many people living with a rare disease but I take the point that the networks need to be resourced as well.