Caít Keane (Fine Gael)

Like most of the other Senators who have spoken, I welcome the referendum. The debate should be on the referendum, not what we would like to see discussed about Europe. Education, as Senators Darragh O'Brien and Walsh called for, in telling the people exactly what is in the treaty, is most important. There was a survey published today where a professor asked those surveyed what interest rate they were paying on their mortgage, what interest rate they were paying on their credit card and what was the rate of inflation, and I noted the percentage of people who needed education about that. Putting something into the Constitution is a serious issue and we, as elected representatives, must ensure that we give it proper debate rather than score political points and give the facts rather than what we would like to debate, for which, hopefully, we will have another day.

In Europe, today is rare disease day to give a voice to the voiceless. According to the organisation GRDO, there are 250,000 people who suffer from different types of rare disease. It is difficult for them to get access to proper care and there is no access to a clear pathway for medical attention. A survey by the organisation GRDO demonstrated that one in seven have waited more than ten years for a diagnosis of their condition and 37% got a wrong diagnosis. We must do something about that. According to that survey, 60% stated that they got their information from the Internet. All the organisation is looking for is, not a main national body or organisation, but a sub-office in the Department of Health where anybody suffering with a rare disease can have a clear pathway to acknowledge that he or she will be looked at early in their disease because preventive medicine saves the country money. I ask the Minister for Health to look at establishing an office - or a person at whom the buck stops - which the organisation or the persons affected can ring up to ask the avenue they should go down. It would reduce the time spent shunting patients between one doctor and the other and, most important, would lead to a better outcome for those suffering from the disease. When one considers our population, 250,000 people is no small number.