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

Photo of Jerry ButtimerJerry Buttimer (Cork South Central, Fine Gael) | Oireachtas source

I welcome everybody to the meeting. I remind members, witnesses and the people seated in the Gallery that mobile phones should be switched off or left in airplane mode as they interfere with the broadcasting of proceedings. Failure to do so may mean a presentation is not covered further afield which would do everyone a disservice but we must also be fair to the staff who must wear headphones.

Next Saturday, 28 February, is national rare disease day. As we have done in the past, at the invitation of Deputy Ó Caoláin, this committee held a meeting on rare diseases which was a good and successful venture. We feel it is important that the committee marks national rare disease day with a meeting to discuss the subject. Last year, the committee discussed the launch of the national rare disease plan for Ireland. A year on, the committee wishes to take stock of progress made with the implementation of the national rare disease plan and to discuss the next steps to take with the key stakeholders that are responsible for its implementation.

I welcome the following: Dr. John Devlin, chair of the national steering group on rare diseases; Mr. Liam McCormack, Department of Health; Ms Helen Byrne, assistant national director, acute hospital services, HSE; Dr. Colm Henry, national clinical adviser and group leader for acute hospitals, HSE; Mr. Tony Heffernan, founder of the Saoirse Foundation; Ms Avril Daly, chair, Genetic and Rare Disorders Organisation; Ms Eibhlin Mulroe, CEO, Irish Platform for Patients' Organisations, Science and Industry; and Dr. Avril Kennan, member of the rare diseases task force. Apologies have been received from Mr. Philip Watt, CEO, Cystic Fibrosis Ireland, who has been a key player with us on this committee. He was to attend today but unfortunately he cannot do so for personal reasons. I am sure many of the speakers will cover the points that he might have wished to raise.

By virtue of section 17(2)(l) of the Defamation Act 2009, witnesses are protected by absolute privilege in respect of their evidence to the committee. If, however, they are directed by it to cease giving evidence on a particular matter and continue to so do, they are entitled thereafter only to qualified privilege in respect of their evidence. They are directed that only evidence connected with the subject matter of these proceedings is to be given and asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person or an entity by name or in such a way as to make him, her or it identifiable.

Members are reminded of the long-standing parliamentary practice to the effect that they should not comment on, criticise or make charges against a person outside the Houses or an official, either by name or in such a way as to make him or her identifiable.

I invite Dr. Devlin to make his opening remarks.

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