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Orphanet website Ireland entry point

Orphanet Ireland
Orphanet international services
  • An inventory and classification of rare diseases
  • An encyclopaedia
  • A directory of services: clinics, laboratories, research projects, registries, clinical trials, patient organisations
  • An inventory of orphan drugs
  • Guidelines, reports
  • A newsletter
Access these services in:

Welcome to the Orphanet Ireland national website! 


This page presents the news, events and documents of national significance.

To access all information on rare diseases, orphan drugs and expert services visit the main Orphanet portal (



The National Rare Diseases Office now hosts Orphanet Ireland!

The new Orphanet Ireland team has now started with repatriation of our national activity from Manchester, UK! The Health Service Executive (HSE), in partnership with the EC 3rd  Joint Action on Rare Diseases (2015-2018) is now funding the work of Orphanet Ireland.  The HSE has delegated the work of the Orphanet Ireland team to the new National Rare Diseases Office, located at the Mater Hospital, pending the opening of the New Children’s Hospital. 


Over the coming months and years we will be developing Ireland’s Orphanet website into your comprehensive guide to rare disease information and services in Ireland with inclusion of sites designated as National Centres of Expertise according to the EUCERD (European Expert Group on Rare Diseases) criteria and externally accredited Laboratory Providers for rare disease testing. 



Are you looking for...


Irish Rare Disease expert centres, laboratories and patient organisations?


All Irish information is held on the main database at



General information about rare disease supports in Ireland?


Consult the National Rare Diseases Office website here or phone the information line at freephone 1800 240 365 or +353 (01) 854 5605.



Help with registering your rare disease activity on Orphanet?


Contact us at or  +353 (01) 809-7475 or refer to our page for expert centres here.

Access Orphanet services in Ireland and other countries in:
Legal noticeContact us — Last updated on: 16-09-27