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Genetic Alliance UK workshops – registration deadline

October 26

CELL AND GENE THERAPY ENGAGEMENT WORKSHOPS

 

Genetic Alliance UK are organising a series of virtual workshops on the topic of cell and gene therapies. It is a great opportunity to learn about cell and gene therapies from a series of experts and some of the challenges these therapies face reaching people affected by rare and genetic conditions in the UK.

 

These virtual workshops will explore:

  • what cell and gene therapies are
  • why they’re important
  • how cell and gene therapies are manufactured and developed
  • how they are delivered to patients on the NHS
  • what the regulatory processes are for cell and gene therapies
  • how patients can get involved in the decision making processes around cell and gene therapies

Who is invited:

  • If you / a member of your family / you care for someone who has a diagnosed genetic or non-genetic rare condition or a suspected genetic condition.
  • Representatives from organisations supporting the rare, genetic and undiagnosed community are also able to take part.
  • You will have to be over 18 to take part.

There will be three virtual workshops each lasting 1 hour 30 minutes – 2 hours each.

For more details and to sign up to the workshops, please visit the Genetics Alliance event webpage.

Organiser

Genetic Alliance UK
Email:
contactus@geneticalliance.org.uk
Website:
https://geneticalliance.org.uk/

Venue

Online
United Kingdom + Google Map

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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.