xia-gibbs syndrome patient registry information session
On 16th September 2023, Xia-Gibbs Society hosted an information session online to provide an update to Xia-Gibbs Syndrome families on the progress of our research grant program and the Xia-Gibbs Syndrome Patient Registry.
Professor Richard Gibbs and Dr Jianhong Hu of Baylor College of Medicine Human Genome Sequencing Center and Dr Adam Hansen, CEO and Founder of Geneial presented the new technology platform which will house the Xia-Gibbs Syndrome Patient Registry, explaining why the Registry is critically important to research into the syndrome.
The presentation was recorded for those who could not attend and can be accessed below, with the presentation slides available here.
You can find out more about the work of Xia-Gibbs Society, including our annual Xia-Gibbs Society Research Grant Award, here.
To request information about the XGS Patient Registry, please complete this form.