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Rare Disease Day 2020- Westminster Reception

February 26 2020 @ 12:15 PM - 2:45 PM

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About this Event

Join Rare Disease UK for our annual Rare Disease Day Westminster Reception.

Speakers include:

– Baroness Blackwood, Parliamentary Under-Secretary of State for Life Science

– Dr Jayne Spink, Chair of Rare Disease UK and Chief Executive of Genetic Alliance UK

– Amanda Brodie, patient affected by Cushing’s disease

Further information will be announced in due course.

For more information, you can contact Genetic Alliance UK’s Policy and Public Affairs Officer, Sophie Peet – sophie.peet@geneticalliance.org.uk.

Sign up here

Please note that if you are unable to attend, you must cancel your ticket 48 hours before the event.


House of Commons
Terrace Marquee, St Margaret Street
London, SW1A0AA United Kingdom
+ Google Map
With any Whole Genome Sequencing (WGS) test ordered, a Record of Discussion (RoD) form will also need to be submitted. This document is to record the patient’s consent for genomic testing and their choice on taking part in research. Guidance on the patient choice conversation can be found here
This RoD form will be available for clinicians to download from this webpage. Once completed with the patient, it can be send to the lab with the corresponding test order form and sample.
Tests available to order will be listed in the National Genomic Test Directory. A test order form will soon be made available for clinicians on this webpage to download and complete. This form will include the address of the laboratory that the appropriate sample and completed form needs to be sent to.
Until the new Genomic Laboratory Service goes live, please continue to follow existing test order processes.
Later this year, the online test ordering tool for Whole Genome Sequencing will be integrated into the National Genomics Informatics System (NGIS) and clinicians will be able to search or filter to find a clinical indication, confirm eligibility criteria and start the test request process for their patient.