Louise O'Reilly (Dublin Fingal, Sinn Fein) | Oireachtas source

We are joined for this session by representatives of the Alpha One Foundation, an advocacy group for Respreeza, and Muscular Dystrophy Ireland, an advocacy group for Translarna, to discuss the subject of funding for orphan drugs. On behalf of the committee, I welcome Ms Geraldine Kelly and Professor Gerry McElvaney of the Alpha One Foundation and Ms Clair Kelly and Mr. Richard Lodge of Muscular Dystrophy Ireland.

I draw the witnesses' attention to the fact that by virtue of section 17(2)(l) of the Defamation Act 2009, they are protected by absolute privilege in respect of their evidence to the committee. However, if they are directed by the committee to cease giving evidence on a particular matter and they continue to do so, 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 are asked to respect the parliamentary practice to the effect that, where possible, they should not criticise or make charges against any person or entity by name or in such a way as to make him, her or it identifiable. I also advise them that any submission or opening statement they have made to the committee may be published on the committee website after this meeting.

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 of the Houses or an official either by name or in such a way as to make him or her identifiable.

The witnesses are all very welcome. I am sure they will have listened to the proceedings of the previous session with interest, as we all did. I thank them for being here with us. I ask Ms Kelly of the Alpha One Foundation to make her opening statement.