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Orphanet website UK entry point

Orphanet United Kingdom
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
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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 (




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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To update or register your activities, including registering expert resources, please follow the link below or send us an email using the address above.



To register rare disease expert centres that are not nationally designated, please see the link below for the criteria used.







Rare Disease Day 2020

Rare Disease Day will be celebrated in February. EURORDIS (Rare Diseases Europe) who organises this annual event, has collaborated once again with its partners to make this day possible for the rare disease community. Please see link below for more details on dates and venues for the variety of events around the country.







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Legal noticeContact us — Last updated on: 19-08-02