News

NIH Agency Pioneers Collaborative Research into Rare Diseases

A little-known government entity within the National Institutes of Health (NIH) is helping to lead U.S. efforts to speed up the development of therapies for some 7,000 rare diseases. The Office of Rare Diseases Research (ORDR), headquartered in Bethesda, Maryland, was established in 1993 within the NIH Office of the…

Alabama Scientist, Mom Spearheads Prader-Willi Research

If Theresa Strong didn’t keep the family fridge locked, her 23-year-old son Daniel might very well eat himself to death. It sounds shocking, but that’s part of the daily routine for parents of children and young adults with Prader-Willi syndrome (PWS), a complex genetic disorder that affects about 1…

Caregivers of Prader-Willi Patients Need More Support, Study Shows

Caring for patients with Prader-Willi syndrome (PWS) has a significant effect on caregivers’ quality of life, and caregivers are in need of better support, a recent study found. Despite the positive effects that growth hormone therapy has had for patients with PWS, including improving their height, strength, and sense of well-being, those…