When Kenneth Raymond was diagnosed with Charcot-Marie-Tooth (CMT) disease subtype 1A more than 20 years ago, there was little…
Articles by Hawken Miller
A chance meeting at a conference four years ago led two researchers to join forces and resulted in a…
Nonprofits, scientists, governmental organizations, and the rare disease drug development industry have long cited…
A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for…
The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally…
It was an unexpected $1 million gift even for Kent and Michele Stahl. Austin Stahl, 28, and sister…
Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by…
Karina Vaile is an accomplished visual artist, but a diagnosis of Charcot-Marie-Tooth (CMT) disease type 1 subtype A 12…
Bionews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper…
A rare disease puts an economic burden on the patients, families, and caregivers that it affects, and will no doubt…