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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 (www.orpha.net)

 


 

Orphanet Ireland is curated by staff in the National Rare Disease Office (NRDO) to develop a catalogue of rare disease resources in Ireland, housed on Orphanet.  

 

RARE DISEASES IN IRELAND - NEWS

The Transition Model of Care for Rare Diseases has been published by the National Clinical Programme for Rare Diseases.  You can access the full document and the summary from the 'Documents' list on the left hand side of the page.

 

A Workshop on Clinical Research in Rare Diseases was held by the National Clinical Programme for Rare DIseases in February 2018.  You can find the report of the meeting in the Documents list on the left hand side of the page.


 


 

 

Are you looking for...

 

Irish Rare Disease expert centres, laboratories and patient organisations?

All Irish information is held on the main database at www.orpha.net


Help with registering your rare disease activity on Orphanet?

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

 

Information about rare diseases and supports in Ireland?

Consult the National Rare Diseases Office information services:

Website:  www.rarediseases.ie 

Telephone: + 353 (01) 854 5065

Email: rare.diseases@mater.ie

 





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Legal noticeContact us — Last updated on: 18-10-25