A trio of advocacy groups have come together to help families understand safety risks associated with Vykat XR (diazoxide choline), an oral treatment approved to ease hyperphagia, or excessive hunger, in people with Prader-Willi syndrome (PWS). In light of new safety data reported since Vykat XR became commercially…
News
A simple ultrasound measurement of the calf muscle can help identify low muscle mass in people with Prader-Willi syndrome, offering a potential alternative to radiation-based scans, a study in Taiwan suggests. Among 48 people with the genetic condition, all of whom had obesity, researchers found that more than half…
Children with Prader-Willi syndrome (PWS) have different combinations of cognitive and emotional difficulties, and while families experience similar caregiving burden regardless of their child’s profile, understanding these differences may help provide more personalized support for their behavior and daily functioning, according to a study. “This study has provided a…
People with Prader-Willi syndrome (PWS) that’s caused by a certain type of genetic mutation may experience abnormalities in how the brain processes information that make them more vulnerable to psychosis — which is more common among PWS patients than in the general population. That’s according to a new study…
Supplemental oxygen is more effective at easing brain-related breathing disruptions during sleep for infants with Prader-Willi syndrome (PWS) than medical air, a small clinical trial has found. The proof-of-concept study compared the two approaches in 10 infants with PWS who had central sleep apnea (CSA) — a condition in…
In people with Prader-Willi syndrome (PWS), younger age, a disease-causing genetic deletion, and less severe food-related behavioral problems are significantly associated with better health-related quality of life (HRQOL), a Japanese study reports. “Support during the transition from late adolescence to early adulthood and attention to problematic food-related behaviors may…
Long-term treatment with Vykat XR (diazoxide choline) safely provides lasting relief from the uncontrollable hunger and behavioral struggles associated with Prader-Willi syndrome (PWS), according to new clinical data. Recent trial results also show that patients who temporarily paused the treatment quickly regained its benefits after restarting. That’s according…
The first participant has been dosed in a proof-of-concept, open-label Phase 2a clinical trial testing Consynance Therapeutics’ experimental oral therapy CSTI-500 in adolescents and adults with Prader-Willi syndrome (PWS). Supported in part by a venture philanthropy investment from the Foundation for Prader-Willi Research (FPWR), the Phase 2a study…
Treatment with setmelanotide helped reduce uncontrollable hunger, known as hyperphagia, and also eased anxiety in children and adults with obesity due to Prader-Willi syndrome (PWS). The Rhythm Pharmaceuticals‘ experimental injection therapy was also shown to reduce body fat and preserve lean mass in individuals with PWS. That’s according…
Most infants with Prader-Willi syndrome (PWS) experience sleep-disordered breathing and obstructive sleep apnea before ever starting growth hormone therapy, a small Belgian study shows. The findings challenge previous suggestions that growth hormone therapy, a standard treatment for PWS, is what primarily drives the risk of obstructive sleep apnea (OSA),…
Recent Posts
- PWS advocacy groups share safety guidance on approved treatment
- Sometimes, navigating PWS simply means weathering the storm
- A break from daily routines brought anxiety, then freedom, for my son
- Calf ultrasound shows promise for detecting muscle loss in PWS
- Children with PWS show distinct profiles of cognitive, emotional difficulties
- There’s no autopilot when raising 2 kids with Prader-Willi syndrome
- Study IDs genetic subtype as possible psychosis risk factor in PWS
- We’re running our own race without the milestone charts, one win at a time
- Oxygen therapy brings sweet comfort to infants with PWS sleep apnea
- Why we said yes to adopting 2 children with Prader-Willi syndrome