Health Committee to mark National Rare Diseases Day as it meets with groups dealing with rare diseases

Those attending meeting are:  Genetic and Rare Disorders Organisation, Academic Centre on Rare Diseases, Professor Eileen Treacy, Special Needs Parents Association and Rett Syndrome Ireland

Committee Chairman, Jerry Buttimer TD said: “Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS, the non-governmental alliance of patient organisations representing 614 rare disease patient organisations in 58 countries, at the international level and by National Alliances and Patient Organisations at the national level. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients’ lives.

“Our meeting will enable committee members to get an in-depth briefing on the issue in Ireland and provide the groups dealing with various rare diseases with an opportunity to outline the key issues they face in terms of prevention, detection and treatment of rare diseases, access to appropriate medication and the identification of appropriate centres of expertise for rare diseases which is a key priority.”

The meeting will start at 9.30am in Committee Room 2, Leinster House tomorrow, Thursday, 27th February 2014.

Committee proceedings can be followed live here.

Committee proceedings can also be viewed on the move, through the Houses of the Oireachtas Smartphone App, available for Apple and Android devices.

Media Enquiries to:

Ciaran Brennan,
Houses of the Oireachtas,
Communications Unit,
Leinster House,
Dublin 2

Committee Membership:

Deputies: Jerry Buttimer (Chair), Catherine Byrne, Ciara Conway (Vice-Chair), Regina Doherty, Robert Dowds, Peter M Fitzpatrick, Seamus Healy, Billy Kelleher, Eamonn Maloney, Mattie McGrath, Sandra McLellan, Dan Neville, Mary Mitchell O’Connor, Caoimhghín Ó Caoláin and Robert Troy

Senators: Colm Burke, John Crown, John Gilroy, Imelda Henry, Marc Mac Sharry and Jillian Van Turnhout