Note: This story was updated July 13, 2022, to correct the name of Rare-X’s CEO Charlene Son Rigby.
Articles by Hawken Miller
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…
Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by…
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…
The nonprofit RARE-X is creating an easily-accessible, centralized data hub for all rare disease patient data that can help…
It’s been nearly a year since the EveryLife Foundation for Rare Diseases released its expansive report finding the total economic burden of rare disorders in the U.S. to be nearly $1 trillion.
Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends,…
Football and science seem to be disparate fields of play at first glance, but the nonprofit Uplifting Athletes is…