February 16, 2023

Clinical drug trial research brings hope for children who have rare tumor disease

Cheryl Navar was 24 weeks into her pregnancy when doctors found multiple tumors in her unborn baby’s heart. Before baby Nora entered the world, her soon-to-be parents sat in their hometown in Corpus Christi to learn about a rare disease…

September 1, 2022

Second patient in the world receives Moderna mRNA trial infusion at UTHealth Houston for glycogen storage disease

Imagine having to drink a solution of cornstarch and water every four hours to survive, and that missing a dose, even by 15 minutes, could lead to seizures and death. This is the reality for Rebecca Tarrence, who has glycogen…

December 2, 2021

Northrup leads study for Tuberous Sclerosis Complex

Hope Northrup, MD Recent research led by Hope Northrup, MD, professor in the Department of Pediatrics, and various other chairs and cochairs from the International TSC Consensus Group, hoping to update diagnostic criteria and recommendations for surveillance and management of Tuberous sclerosis…

November 4, 2021

McGovern joins new NORD Rare Disease Centers of Excellence Network

McGovern Medical School has announced its designation as a NORD Rare Disease Center of Excellence, joining a highly select group of 31 medical centers nationwide as part of an innovative network seeking to expand access, advance care, and research for…

December 21, 2020

The Families of Children With Unexplained Disabilities Are Finally Getting Answers

Hope Northrup, MD, was quoted in a Texas Monthly online article about how genetic exome sequencing has helped physicians diagnose patients with rare diseases. External link to the article: The Families of Children With Unexplained Disabilities Are Finally Getting Answers