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Westminster Health Forum: Priorities for rare disease research, diagnosis, and care in the UK

January 21 2022 @ 8:00 AM - 5:00 PM

This online Westminster Health Forum conference will discuss the next steps for rare diseases policy in the UK.

Delegates will assess:

  • the Rare Diseases Framework –  priorities going forward if its ambitions are to be delivered, as well as progress during it first year
  • the impact of the pandemic
  • the role of genomics in improving diagnosis and care
  • the future for research, treatment access, and system preparedness

Keynote speakers are:

Professor Dame Sue Hill, Chief Scientific Officer for England and Senior Responsible Officer for Genomics, NHS England and NHS Improvement; Dr Kath Bainbridge, Head of Genomic Science and Emerging Technologies, Department of Health and Social Care; and Dr Ellen Thomas, Clinical Director and Director of Quality, Genomics England.

View the full agenda and find out how to book your place via the Westminster Health Forum conference page.


United Kingdom


Westminster Health Forum
01344 864796
View Organiser Website
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.