Rare diseases
Celebrating the HRCI/HRB Joint Funding Scheme
HRCI is hosting a celebration of the HRCI-HRB Joint Funding Scheme on December 1st for our members, researchers and funders. We will be acknowledging the high-calibre research projects that were funded in the last round and the efforts of all charities and researchers who participated. We are also excited to be announcing the first ever winner […]
An Easyguide to Rare Diseases in Ireland and Consensus for Action
Rare diseases are characterised by their relatively low prevalence (less than 1 in 2,000 people in the EU). To have a rare disease is to have a condition that often goes undiagnosed for years. Doctors may never have seen the condition before and hospital diagnostic services may struggle to find the rare disease presented by […]
Rare Disease Research in Ireland: The State of Play
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 […]
Developing a Patient Registry: A Practical Guide
September 2018 Patient registries are broadly recognised as a critical underpinning for improving healthcare through research. As an umbrella organisation for many medical research charities intimately involved in this pursuit, registries are a reoccurring theme. Despite their importance however, in too many cases, registries remain a thing of the future. The challenges to developing registries […]
