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Orphanet website UK entry point

Orphanet United Kingdom
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About Orphanet UK and PHE

Public Health England (PHE) hosts Orphanet-UK. PHE is an operationally autonomous executive agency of the Department of Health. It exists to protect and improve the nation's health and wellbeing, and reduce health inequalities. PHE achieves these through advocacy, partnerships, world-class science, knowledge and intelligence, and the delivery of specialist public health services.


Under the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS), Orphanet UK operates to partly fulfil PHE's commitments to UK Strategy for Rare diseases -The UK Strategy for Rare Diseases 


The UK Implementation Plans: 

Implementation Plan 


Implementation Plan England 2019  


Implementation Plan Scotland 


Implementation Plan Wales 


Implementation Plan NI




The NCARDRS was launched on 1st of April 2015, as a resource to support patients, clinicians, service delivery, commissioning and public health. The service looks to engage patients, charities and public, therefore the documents below provide details on the importance of the service, the benefits and options for patients: 


NCARDRS under Public Health England





NCARDRS Patient Leaflet



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Legal noticeContact us — Last updated on: 21-04-07