Imcivree (setmelanotide), Rhythm Pharmaceuticals’ anti obesity drug, is now approved in the United Kingdom to help promote weight loss and control hunger in people as young as age 4 with acquired hypothalamic obesity (aHO). The U.K.’s Medicines and Healthcare products Regulatory Agency (MHRA) has expanded the drug’s marketing…
News
Some people diagnosed with an inherited retinal disease (IRD), which affects the light-sensitive layer of the eye, may actually have unrecognized Bardet-Biedl syndrome (BBS), according to a study from Jordan involving 100 families with presumed isolated IRD. After genetic testing identified disease-causing variants in genes associated with both BBS and…
Since Imcivree (setmelanotide) was approved in the U.S. in March to support weight loss in people ages 4 and older with acquired hypothalamic obesity (aHO), its maker, Rhythm Pharmaceuticals, has received more than 400 patient forms seeking to start treatment from about 300 prescribers. “Rhythm continues to…
For a long time, I never imagined that my story could help someone else. I spent years feeling embarrassed by my blindness, ashamed of my obsessive-compulsive disorder (OCD), and hesitant to talk about the challenges of living with Bardet-Biedl syndrome (BBS). Instead of allowing people to see those parts…
An 11-year-old girl in England with Bardet-Biedl syndrome (BBS) has become the second person ever to receive an experimental gene therapy designed to preserve eyesight in people with conditions such as BBS that are due to certain genetic mutations. Catherine L’Estrange, who lives in London, was diagnosed as…
A weight-loss procedure called bariatric surgery may be effective for adults with acquired hypothalamic obesity (aHO), but benefits generally appear to be more limited than those seen in people with common obesity, a study suggests. While the surgery was generally safe and resulted in clinically meaningful weight loss, more…
Adults with Bardet-Biedl syndrome (BBS) generally report poorer physical, general, and social well-being than the general population, according to a study from Norway. Still, most patients show no clinically significant problems in everyday executive functioning — the mental skills used to plan, organize, prioritize, and regulate behavior — despite frequent…
A newly published expert review has confirmed trial data — from a late-stage study dubbed TRANSCEND — showing that treatment with Imcivree (setmelanotide) helps promote weight loss and reduce hunger in people with acquired hypothalamic obesity (aHO). The original findings from the Phase 3 TRANSCEND trial (NCT05774756),…
A Race Against Blindness, a nonprofit dedicated to funding research into Bardet-Biedl syndrome (BBS) and other inherited conditions that cause childhood blindness, is running a fundraising raffle where participants will have the chance to win a new car and thousands in cash. The Second Chance Lexus Overtrail…
Surgical treatment and the extent of brain damage are key factors linked to a high risk of acquired hypothalamic obesity (AHO) in children with tumors affecting the hypothalamus, according to a new study. The research reveals that nearly half of these pediatric patients develop AHO, with the condition emerging…
Recent Posts
- Anti obesity drug approved in UK to ease hunger, promote weight loss
- Learning to show up when the burden of grief is heavy
- Genetic tests reveal Bardet-Biedl syndrome in eye disease patients
- Everything comes full circle at the BBS Foundation’s 2026 Family Conference
- New treatment for acquired obesity sees strong early US uptake