CHARLOTTSVILLE, VA (CVILLE RIGHT NOW) – UVA Health this coming Monday and Tuesday will welcome providers from all over the world to an Olivia’s Light Pediatric Rare Disease Conference at the UVA Student Health and Wellness Center. The conference will highlight different aspects of the rare disease journey, with an emphasis on rapid broad genetic testing, particularly whole exome and whole genome sequencing. The organization, Olivia’s Light, was started by Jenna and Ben King — whose daughter Olivia died of a rare neurological disorder that was diagnosed at UVA Health Children’s Hospital through broad genetic testing. After being discharged in 2022 from UVA Children’s at 2-and-a-half months old, a diagnosis allowed them clarity in next steps and comfort until she passed in her mom’s arms seven weeks later.

King said it’s scary to think other families could possibly be going through this without those answers, and Olivia’s Light wants to do their part in getting those families answers that they need. Click here for conference information.
Click here for the King’s full story and all the Olivia’s Light information.