Rare and Rural By Rhonda Rowland, WDA President We all love a small town. Images come to mind of holiday parades and a tight community where everyone knows who you are. It’s those defining characteristics that have helped carry 35-year-old Travis Grogan through his recovery from the devastating effects of [...]

A 25-year dream coming close to reality By Alice Williams, WDA Communications Director Since the 1960s, the United States has been doing newborn screening (NBS) for various diseases. What is NBS? It’s a simple, quick heel prick test done when a baby is one to two days old. A small [...]

By Edward Tabor, MD, WDA Board Member The main source of copper for humans is food, and Wilson disease patients usually limit the amount of high-copper food they eat. However, copper is also found in many non-food items that touch our skin. Can copper be absorbed through the skin? Do [...]

By Rhonda Rowland, WDA PresidentWe continue the story of two trailblazers who are among the first Wilson disease (WD) patients to volunteer for one of the two gene therapy clinical trials now underway for our rare genetic liver disorder.  Emily signed up for the Ultragenyx trial and Warren volunteered for [...]

By Rhonda Rowland, WDA President The two gene therapy clinical trials for Wilson disease (WD) launched by Ultragenyx and Vivet Therapeutics are underway! Here, we introduce the WD community to two people who are trailblazers in these studies that will show us if gene therapy works as a treatment [...]

By Rhonda Rowland, WDA President I’m study participant number 30 in the Wilson Disease (WD) Patient Registry. That’s not exciting. However, if you’re participant number 100, you represent a milestone. And, that is exciting. Especially for those who’ve put in countless hours and tremendous effort to recruit patients, test them [...]