Loading Events

« All Events

  • This event has passed.

Lunch and Learn: Tuberous Sclerosis Complex (TSC): an update for health professionals

September 28 2023 @ 1:00 PM - 2:00 PM

Tuberous Sclerosis Complex (TSC): an update for health professionals

TSC is a rare genetic condition that causes benign tumours to grow in the brain as well as other areas of the body. This is a lifelong condition, with no cure, but some symptoms can be treated. Join our speakers to hear more about this condition, the testing, care pathways and support available for patients and their families.


Agenda and speakers:

  • Dr Nicholas Annear, Consultant in Acute Medicine & Nephrology, SGUH, Overview of Tuberous Sclerosis Complex and Genomic testing
  • Lydia Israel, Clinical Nurse Specialist (CNS) for Tuberous Sclerosis Complex, SGUH, The CNS as care coordinator for patients with a rare genetic condition.
  • Anna Gaunt, Support Line Manager, Tuberous Sclerosis Association (TSA), Support for anyone affected by Tuberous Sclerosis Complex


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.