Cooperating and Collaborating I recently had the great pleasure of talking with the members of Health Research Charities Ireland. The presentation was about the value of us, as patients and members of the public, getting interested in and becoming actively involved with researchers working in laboratories. I don’t mean that we patients and public doing […]
On Feb 23rd 2022, at the invitation of Deputy Pádraig O’Sullivan, we had the opportunity to discuss rare diseases with Minister Stephen Donnelly, Minister Anne Rabbitte and other interested deputies and senators. We attended this event, held in advance of Rare Disease Day 2022, with colleagues from Rare Diseases Ireland, IPPOSI and CF Ireland, along with […]
This piece by HRCI CEO, Dr Avril Kennan, appears in ‘An Easyguide to Rare Diseases in Ireland and Consensus for Action‘, published in February 2020, by the Rare Disease Taskforce. For most rare diseases there is no cure and the management of symptoms can be very hampered by a lack of knowledge and by limited […]
[accordionmenu id=”uniqueba38695″ accordionmenu=”732″] Our Latest Report, and the first under the banner of the Health Research Charities Ireland. Click to view it on screen or download it.