25 May 2021, 15:07
The Joint Committee on Health will discuss ways of improving the lives of those affected by rare diseases and their families at a meeting in Leinster House tomorrow, Wednesday 26 May at 9.30am
Rare Diseases Ireland Chief Executive Officer (CEO) Vicky McGrath; Retina International CEO and Vice President of Eurordis Rare Diseases Europe, Avril Daly; and Consultant Clinical Geneticist, Children's Health Ireland at Crumlin Dr. Sally Ann Lynch will attend the meeting virtually in Committee Room 2 for the discussion.
Speaking before the meeting, Cathaoirleach of the Committee Seán Crowe TD: said: “There are an estimated 300,000 people living with rare diseases in Ireland. The Committee welcomes this opportunity to hear about the reality of their day to day lives and the lives of their loved ones. We welcome this engagement - not only to discuss the additional challenges people with rare diseases face and continue to face as a result of the Covid-19 pandemic - but ways to improve their lives in general from diagnostics, to accessing out-patient and in-patient care and accessing treatments including orphan drugs.”
Watch the meeting live.
Committee membership
Deputies