As a columnist, I try to read and expose myself to topics that might inform my writing. Recently, I came across a phrase that piqued my interest because it closely reflected what my husband and I, as well as many disease sufferers I’ve met in my work as a patient…
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…
When I married my husband, Aubrey, I knew a hereditary and life-threatening disease affected some members of his family, but I had little other information about it. We naively carried on with our lives, secretly hoping the disease hadn’t reached his generation. When we learned that several of Aubrey’s first…
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…
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, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…