Insights into successful rare disease research

26 March 2012 - Workshop hosted by the Health Research Board on behalf of the National Steering Group


The workshop brought together national and international speakers and Irish researchers. Keynote presentations on the elements involved in successful research in the area of rare disease were followed by a panel discussion on the barriers, solutions and opportunities in rare disease research. 

This meeting was intended to provide an opportunity to input to planning for the future of rare disease research in Ireland and inform deliberations in the area of research for the forthcoming Irish National Plan for Rare Diseases. This event outlined how Ireland can move forward in the area of rare disease research and participate at an international level.


09:00 – 09:30 Registration (tea/coffee)

09:30 – 09:40 Opening Remarks Dr Helen McAvoy, IPH, representing National Steering Group      

09:40 – 10:10 Prof Orla Hardiman, Trinity College Dublin

10:10 – 10:40 Dr José Maria Millan, deputy director of CIBERER, Valencia, Spain

10:40 – 11:10 Prof Brendan Buckley, University College Cork

11:10 – 11:30 Coffee break

11:30 – 12:00 Céline Hubert, Operational Director, Rare Diseases Foundation, France

12:00 - 13:30 Panel Discussion, chaired by Prof Leonie Young, RCSI

13:30   Workshop Close

Download speaker presentations

Celine Hubert

Dr Helen McAvoy

Dr Jose Millan

Professor Brendan Buckley

Professor Orla Hardiman