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 [...]
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 [...]
In 2016, Berna Heyman testified before a U.S. Senate committee about her personal experience with sudden and dramatic increases in drug prices. She was forced to switch drugs to treat her [...]
By: Rhonda Rowland, WDA PresidentBy: Rhonda Rowland, WDA President I’ve spent my career reporting medical news. It’s an important topic to me because I live with my own health [...]
This is the 35th anniversary of 1983 – an important year in my life. And, for anyone living with a rare disease. It was a year full of historic landmarks, too: the [...]
I've read and reported on scientific studies for my entire career, and now I'm finally getting my chance to be a part of one. It's a patient registry study for Wilson disease! [...]
You never know when a chance conversation will change the course of your life. It was the year 2000, and I was attending the International Health and Medical Media Awards, better known [...]
You've heard of penicillin, right? It was one of the first antibiotics – and is still one of the most widely used. It has saved millions of lives since it was discovered, [...]
When was the last time you felt competitive? My last time surprised me, because it was at my book club. It wasn’t about that month's book selection – rather, it was when [...]
Imagine practicing medicine without the internet. In 1983, doctors relied on the medical books in their office or a nearby medical library for reference. Medical journals describing new scientific studies arrived through [...]
