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 an estimated 6-8,000 known rare diseases affecting up to 6% of the total EU population, (at least 30 million Europeans), and perhaps up to 300,000 Irish people during their lives. This means that 6-8% of the Irish population or 1 person in 12 may have a rare disease at some stage in their lifetime. Approximately 70-80% of rare diseases are genetic and are present throughout the person’s entire life.
Learn more about rare diseases with the Irish Easy Guide to Rare Diseases 2013 which gives you more information and real-people stories.
Who we are
The National Rare Diseases Office provides current and reliable information about genetic and rare diseases to patients, families and health professionals. It was established in June 2015 by the Health Services Executive (HSE). It is staffed by Information Scientists who have significant experience working with individuals and families affected by rare disorders. 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.