Travis’s Story of Wilson Disease
By: Rhonda Rowland, WDA President Rare and Rural We all love a small town. Images come to mind of holiday parades and a tight community where everyone knows who you are. [...]
A Makeover For An Old Drug
By: Rhonda Rowland, WDA President Wilson disease (WD) was always fatal until Dr. John Walshe, an English physician, discovered penicillamine in 1956. While WD was no longer a death sentence, with [...]
The 100th Registry Participant
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 [...]
They Said “Yes” to Gene Therapy
By: Rhonda Rowland, WDA President We 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 [...]
Meet the Inaugural Gene Therapy Candidates
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 [...]
High drug costs: the tale of 4 women
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 [...]
98-year-old drug inventor chastises pharma for “behaving badly”
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 [...]
1983: The 35th Anniversary
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 [...]
How We Get Scientific Answers
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! [...]
How a Chance Conversation Led Me to a New Treatment
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 [...]