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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 (www.orpha.net)


WELCOME TO ORPHANET-UK WEBSITE

 

 

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 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 under Public Health England

 

NCARDRS-vision-statement-.pdf

 

NCARDRS Patient Leaflet

 

 

Please contact us through Orphanet-UK@phe.gov.uk

 

 

 


 

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

 

https://www.orpha.net/professor/htdocs/

 

 

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

 

Unofficial-expert-centre-criteria.pdf


 

 

 

 

Rare Disease Day 2017


The rare disease day is been celebrated by several groups and at different locations in the country. http://www.rarediseaseday.org/country/gb/united-kingdom

The national umbrella organisation for all rare disease patients; Rare Disease UK, will be holding three main receptions in Cardiff and London.

 

 

 


 

 

 

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Legal noticeContact us — Last updated on: 17-07-21