Health Research Charities Ireland along with Rare Disease Ireland, Cystic Fibrosis Ireland, IPPOSI and the Northern Ireland Rare Disease Partnership have come together to form The Rare Disease Forum. This is a public and patient involvement initiative for Ireland, North and South, which calls for coordinated action to improve the health and social care needs […]
Research is vital for achieving better outcomes for patients and the public who use health services in Ireland. Current frustrations, positive developments, new ideas and an unshakable belief in the possible stimulated lively, challenging, engaged, multi-stakeholder discussions at the Forum event. Nuanced by input from our expert Steering Group, the Irish Health Research Forum offers […]
The Rare Disease Forum (RDF) is a public and patient involvement (PPI) initiative for Ireland, North and South. The rationale for the Forum is that much more needs to be done to address the health and social care needs of those living with a rare disease in Ireland. The founding organisations and members of the […]
Derek Stewart OBE, patient advocate and Honorary Professor, NUI Galway 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 […]
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.