I welcome the opportunity to contribute to these statements on rare diseases. I chair an ad hoc cross-party committee in the Oireachtas on the subject of rare diseases and have done for some time. My speaking time is very limited. To put it in context, one in 17 people in Ireland has a rare disease. In this Dáil Chamber, that would mean ten Members would have a rare disease. If we populate those ten around the seating in the Chamber it actually brings it to life and gives it reality. We all know someone and there are possibly colleagues who have rare diseases. As colleagues with whom I have been privileged to work will know, particularly Deputy Pádraig O'Sullivan who spoke earlier, I never put this on the record but have said to groups that when we are fighting for a cause that includes the word "rare" in terms of the disease, and "orphan" in terms of the drug, we know we are fighting an uphill battle. Any advocacy work that begins with those two words means being out on the extremes and the sidelines, fighting. My colleague, Deputy Dr. Martin Daly is here and he will know far more about this than I do. One of the ways I look at this is that we are learning much more about the recognised, mainstream diseases, as it were. Drugs are becoming much more targeted and there are more hybrid approaches to tackling many of the regular and everyday conditions that we meet. Where there would have been orphan drugs before, we have an awful lot more hybrid drugs that are born out of existing medications. I fully understand my colleagues mentioning specific conditions. I am reluctant to do so out of the knowledge, having dealt with some constituents over the last decade and beyond, that for every condition we mention here that is in need of assistance, there is probably someone sitting at home saying "what about my condition?" that is one of the 2,000-odd rare diseases. I commend the dynamism, innovation, creativity and research that is going on among the best of our pharma companies. We are very well placed here. I have often told the pharma companies that they really ought to be pushing their weight about a little bit more. Ireland depends hugely on them. We should have far more clinical trials here. It is an issue that the rare diseases group recognises. I commend the Minister on some of the work that has been done recently. Particularly, I welcome the commitment to establish a national rare disease registry and an implementation oversight group. They are some of the things that can be done. I will defer to my colleague, Deputy Dr. Martin Daly.

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