When we think about fighting, we might imagine the Ultimate Fighting Championship ring, where men and women beat each…
Articles by Hawken Miller
Patient registries are a hot topic of rare disease research and many organizations are taking advantage of this resource by…
We can all smile, but there’s one type of smile that shows genuine positive emotion and is nearly impossible to…
Bionews, the publisher of this website, hosted a virtual panel discussion on Rare Disease Day 2022, taking a deeper…
Living with Duchenne muscular dystrophy has plenty of downsides, such as having to use a wheelchair and a BiPAP…
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.
No matter who you are, life will throw you seemingly impossible challenges. It will make you question everything. If you…
Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends,…