Micheál Martin (Cork South Central, Fianna Fail) | Oireachtas source

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.

See this speech in context