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…
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…
A song written and performed by an artist with spinal muscular atrophy (SMA) is the latest project to come out of Genentech’s SMA My Way program, a collaboration that allows those in the SMA community to share knowledge and experiences with others affected by the disease, as well…
One of NBC’s newest TV shows, “Ordinary Joe,” is making a mark in the spinal muscular atrophy (SMA) community for including a character with the disease. The drama series follows protagonist Joe Kimbreau, played by James Wolk, through three separate realities stemming from a single decision he made…
Flying can be an ordeal for many people with disabilities who rely on wheelchairs to get from point A to point B. Sometimes disabled travelers get to their destination only to realize their wheelchair or scooter is broken or missing. In 2019, the year after airlines were required to release…
Ben Lou battles the weakness in his body that comes with having spinal muscular atrophy (SMA) type 2, but his mind is stronger than most: The 18-year-old was accepted to three of the most prestigious universities in the U.S. Lou is now in his first year at the Massachusetts Institute…
BioNews Insights is launching a new survey, in collaboration with SMA News Today, with the goal of understanding how different aspects of this disease affect an individual’s quality of life. The survey, which is expected to take about 15 minutes to complete, opens with WHOQOL-100, a set of questions developed…
