National Rare Diseases Office

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).

 This means that approximately 300,000 Irish people will develop a rare disease at some stage in their life.

Who we are
The National Rare Diseases Office 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.

Rare Diseases Ireland (RDI)

Read RDI research report ‘Living with a Rare Disease in Ireland during the COVID-19 Pandemic: This report highlights how COVID-19 is hindering access to routine treatment and care for people with rare diseases, and is having a detrimental effect on the rare disease community’s health and well-being.

RDI YOUR VOICE MATTERS
We would like to invite you to complete our short survey on your experience of COVID-19 by clicking this link. The survey will only take around 15 minutes to answer.  This survey is for people living with a rare condition, their families and their carers. We would like to know how the pandemic is affecting your care and well-being, the level of support and care that you are receiving during the crisis and what kind of measures or facilities are helping you to deal with this difficult time, if any. The survey will close Monday, May 4th. To share the survey with your friends and family, please forward this email and share this link: https://www.surveymonkey.com/r/RDI-COVID19-Community. Thank you very much for completing our survey. Your lived-experience is important. 

Learn more about rare diseases with An Easyguide to Rare Diseases in Ireland and Consensus for Action which gives you more information and real-people stories.

Privacy Statement

The National Rare Diseases office (NRDO) wants to ensure that it takes the issue of privacy and confidentiality for our information service users seriously. The NRDO complies fully with the responsibilities under the General Data Protection Regulation (EU) 2016/679 (GDPR) which supersedes the Data Protection Directive 95/46/EC. HSE Privacy Statement  

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