Rare diseases
Rare Disease Forum 2022
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 […]
Rare Disease Forum 2023
Patient and Public Involvement in Rare Disease Research Online Event – 18.30pm, Wednesday, June 14th 2023 HRCI were very pleased to host a Rare Disease Forum event, centred around the topic of public and patient involvement (PPI) in research on June 14th. This event aimed to shift the paradigm from rare disease research conducted “to,” […]
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 […]
Rare Disease Forum 2022
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 […]
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 […]
Rare Disease Day 2019 – Bridging Health and Social Care
Date: 28 February 2019 Time(s): 9am-1pm Venue: Chartered Accountants House, Pearse Street, Dublin 2 The 12th annual Rare Disease Day focuses on bridging the gaps in the coordination between medical, social and support services in order to tackle the challenges that people living with a rare disease and their families face every day. Rare Disease Day 2019 is […]
Developing a Patient Registry: A Practical Guide 2018
Click here to read the Guide 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 […]