For most of her life, 38-year-old DeeAnn Edwards Mann has been quiet about having sickle cell disease (SCD). She…
Articles by Hawken Miller
Nonprofits, scientists, governmental organizations, and the rare disease drug development industry have long cited…
Tevin Coleman brought the snow inside last winter. Coleman, a running back for the New York Jets, his wife Akilah…
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…
Until Teonna Woolford faced her own infertility after a haploidentical (half-match) bone marrow transplant, she hadn’t given’t much thought…
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…