What we do

We provide information about genetic and rare diseases. This includes:

  • Specific disease information and clinical expertise
  • Social care supports
  • Patient support groups
  • RD research and clinical trials, in Ireland and across Europe
  • Information for the public on policy on rare diseases
  • Non-directive information on the availability of rare disease specialists

Information is provided through this webpage and the Rare Disease infoline.

Who can the National Rare Diseases Office help find information?

  • People who have rare diseases
  • Parents, family members and carers
  • Doctors,other health care providers, and teachers working with rare diseases
  • Scientists who are studying rare diseases

What we cannot do

We do not diagnose, treat or co-ordinate care for people with rare diseases - our role is limited to help people access reliable rare disease information.  Our service is not a substitute for personal clinical advice or the care plan provided by your GP or specialist doctor. We do not offer the following services:

  • Operate a rare diseases clinic
  • Provide clinical advice or make a diagnosis
  • Provide case management for individual cases
  • Deal with complaints about specific individuals or services

If you wish to make a complaint see information in Service Gaps and Complaints

If you cannot find the information you are looking for please click Difficulty Finding Information

Information on Rare Cancers and Cystic Fibrosis

For more information specific to rare cancers and Cystic Fibrosis (CF) please contact   the specialised programmes for Rare Cancers and Cystic Fibrosis in Ireland. Also you can contact the Irish Cancer Society  and Cystic Fibrosis Ireland.