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:

  1. access to medications for people with rare diseases.
  2. the need for soft opt out organ donation to be implemented and fully resourced.
  3. access to genetic services and supports including genetic counselling and for these to be fully resourced.
  4. 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.

We also thank Willie Penrose TD, Minister Patrick O’Donovan and Taoiseach Leo Varadkar, who were unable to attend but got in touch with us after the meeting to express their interest in the issues raised.
Our sincere thanks to Ruth Coppinger and her team, as well as our colleagues in the rare disease community who came to share their knowledge and expertise – Avril Daly of Retina International, Alan Finglas of MSD Action Foundation, Philip Watt of Cystic Fibrosis Ireland, Dr Atif Awan of CUH Temple Street, Alana Ward of the Genetics Department in Crumlin Hospital, Vicky McGrath Rare Disease Ireland and our colleagues from MRCG and Fighting Blindness.
We are continually amazed by the commitment of those living with a rare disease and their families to advocating for improved supports and services, and we thank the Cystinosis Ireland community as well as the Huntington’s Disease Association, 22Q11 and Muscular Dystrophy Ireland for attending and sharing their experience of life with a rare disease.  As went our hashtag on the day, #RareIsNotRare.
Resources from the session