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


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 patient leaflet


NCARDRS under Public Health England


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The international Rare Disease day is here again and this year's theme is centred on patients' voice. Please see:

Rare Disease UK will be hostig a parliamentary reception at the House of Commons - London on Wednesday 6th March, 2016. For further details, please see: RD day - UK


To also mark the day and the upcoming World Birth Defect day -, the NCARDRS team has put together a write-up, hghlighting what UK is doing in the area of rare diseases. This is published on PHE's ‘Public Health Matters’ blog - please see here: PHE - Rare disease day blog



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