We were delighted to be the guests of Ruth Coppinger TD on Tuesday 25th September for a briefing for Oireachtas members on rare diseases, which was held in Leinster House. The session was informative and highlighted four key issues of interest and importance to the rare disease community in Ireland:
- access to medications for people with rare diseases.
- the need for soft opt out organ donation to be implemented and fully resourced.
- access to genetic services and supports including genetic counselling and for these to be fully resourced.
- Oireachtas members to become champions for rare diseases in Ireland.
The full briefing note is available for reference.
It was a busy day in the House and we were delighted that a significant number of TDs and Senators attended – Senator Rose Conway Walsh, Frank O’Rourke TD, Louise O’Reilly TD, Bobby Aylward TD, Dara Calleary TD, Tom Neville TD, Michael Healy Rae TD, Senator Colm Burke, Peter Burke TD and Senator Gerry Horkan -and others were represented by member of their parliamentary team – James Browne TD, John Brassil TD, Tommy Broughan TD, Michael Harty TD, Richard Boyd Barrett TD, Minister Paul Kehoe, and Stephen Donnelly TD.