Hawken Miller, features writer —

For most of her life, 38-year-old DeeAnn Edwards Mann has been quiet about having sickle cell disease (SCD). She has tried to remain anonymous on sickle cell-related forums and social media conversations, and doesn’t talk about it much with her friends. In some cases, she can even hide her…

Nonprofits, scientists, governmental organizations, and the rare disease drug development industry have long cited 7,000 as the average number of rare diseases in the world. But a new analysis shows there are as many as 10,867 rare diseases globally. And that…

Tevin Coleman brought the snow inside last winter. Coleman, a running back for the New York Jets, his wife Akilah Coleman, and twins celebrated Christmas in January, to accommodate the last few weeks of the NFL regular season. His daughter, Nazaneen, 4, has sickle cell disease, and cold weather…

A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ultimately brought the group of eight by car to temporary accommodations in neighboring Poland last month was physically and emotionally difficult,…

The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues in a nod to its increased use during the ongoing COVID-19 pandemic. NORD’s report card project began seven…

Until Teonna Woolford faced her own infertility after a haploidentical (half-match) bone marrow transplant, she hadn’t given’t much thought to the lack of awareness and resources for sexual health across the sickle cell disease (SCD) community. Hospital stays, liver failure, and a hip replacement surgery were already part…

Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by signing up their patient communities and connecting with researchers. Eric Sid, MD, program officer for the Office of Rare Diseases Research (ORDR), said it is difficult to estimate how…

BioNews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper dive into what it’s like to live with a rare disease, including conversations about advocacy, mental health, survivor’s guilt, treatment of minority patients, and more. The Monday event, “A…

A rare disease puts an economic burden on the patients, families, and caregivers that it affects, and will no doubt be an integral part of discussions on Rare Disease Day 2022, which brings international awareness about the more than 300 million people living with rare disorders. Part of that…

The nonprofit RARE-X is creating an easily-accessible, centralized data hub for all rare disease patient data that can help researchers answer questions about existing disorders, discover new ones, and work toward finding treatments. It was spun out of the work that Nicole Boice, founder and chief engagement officer of…