Colm Burke (Fine Gael) | Oireachtas source

I welcome the Minister of State at the Department of Health, Deputy Alex White. I seek an update on the progress made by the national steering group established in 2011 to address the issue of rare diseases. I was involved when this issue was raised at the time and it is one that has been debated in the House on a number of occasions since. I understand the report of the national steering committee was to be published in 2013. What is the current position in respect of the report?

The issue of rare diseases was brought home to me in the past week when I was contacted in respect of two highly unusual cases involving two young women of 23 and 26 years of age, respectively, both of whom must travel abroad for treatment. I met one of the young women and her parents on Saturday morning. She has pacemakers implanted in her stomach and bowel and is fed intravenously because of the rare disorder from which she suffers. Her case highlighted to me the importance of making progress on this issue. The problem in the case of Ireland is that the numbers suffering from specific rare conditions are so small that a co-operation with other jurisdictions is required to address the matter. We need a detailed plan for dealing with these diseases.