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Westminster Health Forum: Next steps for rare diseases and specialised commissioning

January 21 2021 @ 8:30 AM - 1:15 PM

Next steps for rare diseases and specialised commissioning – policy priorities, utilising genomics, patient engagement and co-ordinating care


This online conference orgainsed by the Westminster Health Forum will discuss the key policy priorities and next steps for improving outcomes in rare diseases and specialised commissioning in England.

Key areas for discussion:

  • the UK Strategy for Rare Diseases
  • commissioning specialised services – in the context of the pandemic, as well as the priorities going forward
  • patient access – improvement for innovative treatments
  • genomics – its role in delivering improvements

Keynote speakers:

Dr Beverly Searle (CEO, Unique – The Rare Chromosome & Gene Disorder Support Group)

Professor Dame Sue Hill (Chief Scientific Officer, NHS England)

Professor Matthew Hurles (Head of Human Genetics, Wellcome Sanger Institute)

To view the full agenda and to book a place on the conference, visit 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.