The latest health news
The FDA’s approval of Aduhelm to treat Alzheimer’s disease has unleashed criticism about the decision and calls for reform within the agency. As advocates for people living with Barth syndrome …
Read More
Bertrand Might was born with a rare disease that had never before been diagnosed, an odyssey that took four grueling years. He was 12 years old when he died last …
Read More
The response to Covid-19 by the biomedical research community in the U.S. and around the globe has been spectacular in both speed and impact. It is time to respond with …
Read More
In the seven difficult years since their son Mateo was diagnosed with a rare disease, Victoria Malvagno and Frank Solorzano have been waiting for medicine to catch up with their …
Read More
A powerful movement is taking shape in the U.S. rare disease community that could transform the lives of millions of people. That’s right — millions. Even though a single rare …
Read More
When Sammy Basso was diagnosed with progeria at 2, it seemed likely that the disease’s hyper-accelerated aging would kill him before he graduated high school. “There was nothing. Nothing. No …
Read More
The suspicion that something was wrong started when the 1-year-old girl’s parents noticed she had trouble holding up her head. It was just the first of what would be many …
Read More
The FDA’s decision to grant accelerated approval to Biogen’s aducanumab (Aduhelm) for the treatment of Alzheimer’s disease was a difficult and bold one that people with the disease, their families, …
Read More
Following the Food and Drug Administration’s recent decision to give the green light to aducanumab, the first treatment approved for Alzheimer’s disease in nearly two decades, the agency has been …
Read More