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…
Note: This story was updated Jan. 25, 2022, to clarify that Target ALS has raised $90 million since its inception in 2010. Amyotrophic lateral sclerosis (ALS) has been a part of Daniel Doctoroff’s life for more than two decades. His father, Martin Doctoroff, died of the disease in 2002, and…
When Leah Stavenhagen was 27, she was living in Paris and traveling through Europe. But an amyotrophic lateral sclerosis (ALS) diagnosis forced her to give up her job as a consultant with Ernst & Young and dashed her dreams of continuing to work abroad. At the time, she seemed…
Once a first-round draft pick for the Atlanta Falcons, Tim Green now is battling another opponent — amyotrophic lateral sclerosis (ALS). The disease has left him unable to walk, speak, eat, drink, or breathe on his own, but he hasn’t let it obscure his positive outlook on life. “I…
BioNews Insights is launching a survey, in collaboration with ALS 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 by…
Football and science seem to be disparate fields of play at first glance, but the nonprofit Uplifting Athletes is finding common ground by leveraging the popularity of college gridiron games to fund research for rare diseases. Its nearly two dozen chapters — representing college football teams across the nation…
Get regular updates to your inbox.