What is a rare disease?
A ‘rare disease’ is defined in Europe as a life-threatening or chronically debilitating disease affecting no more than 5 people per 10,000. There are more than 6000 known rare diseases affecting up to 6% of the total EU population (at least 30 million Europeans).
This means that at any time approximately 300,000 living in Ireland have a rare disease.
Who we are
The National Rare Diseases Office (NRDO) provides current and reliable information about genetic and rare diseases to patients, families and health professionals. The office was established in 2015 by the Health Services Executive (HSE) and is staffed by healthcare professionals who have significant experience working with people affected by rare diseases. Find out what we do.
For relevant information click on one of the sections below:
If you have a query, or if your organisation works with rare diseases and you would like to share information with us, please contact us.
Learn more about rare diseases and stories from people with rare diseases with the Rare Diseases Ireland(RDI) An Easyguide to Rare Diseases in Ireland and Consensus for Action.
NRDO takes the issue of privacy and confidentiality for our information service users seriously. As a HSE office located within the Mater Misericordiae University Hospital, we comply fully with both the HSE Privacy Statement and the Mater Misericordiae University Hospital Privacy Notice
Rare Diseases Ireland (RDI)
Read RDI research report ‘Living with a Rare Disease in Ireland during the COVID-19 Pandemic
Resolution4Rare Join the global community of people living with rare conditions, led by Rare Diseases International, EURORDIS – Rare Diseases Europe and the NGO Committee for Rare Diseases, in calling for a UN Resolution that recognises the complex challenges faced by people living with rare condition, and promotes full participation and inclusion of all people in society Resolution4Rare