Alex White (Dublin South, Labour) | Oireachtas source

The Deputy has been very assiduous in raising this issue. Some of the specific questions raised by him are likely to be only fully addressed in the context of the national plan for rare diseases, on which I have indicated to the House work is well under way. Once finalised, the plan will be published. I do not have any direct involvement in that area but I am aware, because I work in other areas with the officials working on it, that that work is progressing. I am conscious that this work is progressing in the Department.

I had the privilege of opening and addressing a conference on the subject of rare diseases earlier this year. Many of the issues raised by the Deputy were raised at that conference so I have some understanding of them. There are some very committed and strong advocacy groups involved in this area, of which I know the Deputy is aware. He has taken up their case very well this evening and on previous occasions. I am not in a position to address any individual aspects of the plan until such time as it has been finalised and published. This process provides a great opportunity to pull together all of the different priorities which the Deputy rightly says exist, be that in the area of research or the appropriateness of appointing or assigning particular clinicians to this area. All of the aspects of a proper plan, which is clearly needed in this country, will be dealt with in that context. I hope that the plan will be published in the very near future.

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