Testosterone injections are well-tolerated and normalize blood levels of the hormone, but they may raise red blood cell levels excessively in adult men with Prader-Willi syndrome (PWS), according to a recent study. The study, “Single-center real-life experience with testosterone treatment in adult men with Prader-Willi syndrome,”…
News
A special low-calorie diet and appetite suppressing medications — either alone or together — led to substantial weight loss for obese people with Prader-Willi syndrome (PWS), a small study showed. However, many patients struggled to adhere to the treatment regimens and eventually regained the weight, the researchers reported. A very…
The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person on June 26 for a day of learning and networking in Cleveland, Ohio. The event, which brings together the rare disease community, will take place at the InterContinental Cleveland Conference…
Adults with Prader-Willi syndrome (PWS) who weigh more, have a higher body mass index (BMI), and have a larger waist and hip circumference are most likely to respond successfully to a multidisciplinary weight reduction program, according to a single-center, six-year study in Italy. In addition, having PWS caused by…
Certain regions of the brain are unusually small in people with Prader-Willi syndrome (PWS), a study reveals. “The present study provides objective evidence of volumetric alterations in the subcortical, limbic, and brainstem structures in individuals with PWS,” its researchers wrote. The study, “Differential volume reductions in…
A year of treatment with DCCR (diazoxide choline controlled release) tablets, Soleno Therapeutics’ investigational therapy for people with Prader-Willi syndrome (PWS), safely led to sustained reductions in excessive hunger and disease-related behaviors, according to two presentations of data from a Phase 3 trial and its open-label extension. Soleno announced positive findings…
This year’s Prader-Willi syndrome (PWS) Awareness Month has launched, and will be celebrated with several educational and fundraising initiatives worldwide throughout May. Advocates will use the month-long event to raise awareness of the rare disease in the general community, and also among healthcare professionals, lawmakers, and researchers. The aim…
A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ultimately brought the group of eight by car to temporary accommodations in neighboring Poland last month was physically and emotionally difficult,…
Scoliosis — an abnormal sideways curvature of the spine — has a high prevalence among people with Prader-Willi syndrome (PWS), and becomes increasingly more common with older age, a study highlights. In fact, more than 80% of the PWS patients in the study, who were followed for more than…
The European Commission is expected to propose a new governing framework for health data next month, called the European Health Data Space (EHDS), with the aim of connecting national health systems to facilitate secure and efficient transfer of data across systems in different European nations. The move is expected to…
Recent Posts
- ‘Telemental health’ may help ease stress for caregivers of PWS children
- Severe sleep apnea in PWS children strongly linked to extra weight: Study
- Advocating for your child with Prader-Willi syndrome is a lifelong endeavor
- Collecting pop tabs is a small act that makes a big impact
- Safety concerns over PWS therapy ARD-101 pause global clinical trial
- Starting growth hormone before age 2 does not harm PWS sleep
- I’m hopeful a new treatment will benefit my son with Prader-Willi syndrome
- Palatin to test 2 obesity-targeting drugs for PWS in clinical trials this year
- Still-recruiting ARD-101 trial for PWS lowers US enrollment age to 7
- For rare disease families, February is a month of both love and awareness