Rare diseases
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 […]
National Rare Disease Plan for Ireland 2014-2018
[accordionmenu id=”uniqueba38695″ accordionmenu=”732″] The Department of Health published the National Rare Disease Plan in 2014. Below you will find the Plan and a summary/detailed Interim Report on the implementation of the National Rare Disease Plan. The Interim Reports provide an update on progress with the implementation of each of the 48 recommendations in the National […]
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 […]
