Oireachtas Joint and Select Committees
Thursday, 26 February 2015
Joint Oireachtas Committee on Health and Children
Implementation of National Rare Disease Plan 2014-18: Discussion
9:30 am
Dr. John Devlin:
I did not mean to gloss over the Deputy's point. It was a very relevant question. Our focus initially was on engaging with the HSE on a number of key issues around the programme, the office, access to orphan drugs and so on. The national steering committee is due to meet in the next couple of weeks to discuss this issue and is representative, as the Deputy knows. Mr. Heffernan has expressed a view in that regard. We are open to considering what works best. We did not actually have a meeting of the oversight committee as such because a lot of changes were taking place at the time, but we wanted to continue to do business with the HSE. The question of whether it should be the steering committee or something different that takes on this role is less significant, as long as it does the right things and we monitor the plan and everything else. Let us not forget that we will be reporting on a pile of key indicators in relation to the rare diseases plan. There are about 20 or 30 indicators on which we are going to report and which will very much form part of the information we will be making available to everybody.
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