Health Minister Leo Varadkar at the launch of the Rare Disease Office
Health Minister Leo Varadkar at the launch of the Rare Disease Office

After many years of tireless advocacy work, of which DEBRA have been a part of, a National Rare Disease Office was launched by Health Minister Leo Varadkar in early June. This office will gather information on people living with rare diseases in Ireland and help them to access appropriate services. Philip Watt, Chair of the Medical Research Charities Group and CEO of Cystic Fibrosis Ireland, gave DEBRA a lovely mention in his speech at the launch…

‘The fortunate few [rare diseases] – around 20 – have a patient group to represent them. They are understaffed and overworked but they do an amazing job….DEBRA Ireland for example which works with people with EB, a genetic condition that can affect the skin and internal linings of the body and for those who know and care about EB, it can break your heart. It survives through the dedication of a small team including Jimmy Fearon its CEO and Dr Avril Kennan their Head of Research and Advocacy. ‘

Read more about the launch of the Rare Disease Office in this recent article by The Journal