Have you ever wanted to know more about the drug development process and how patients and patient organizations like FPWR can engage with and inform the process? The National Organization for Rare Diseases (NORD) has developed a free educational seri...
Jessica Bohonowych
Recent Posts
Individuals with PWS often exhibit a variety of self-injurious behaviors, and one of the most common of these is skin picking. Individuals typically start with a fixation on some imperfection in the skin. This can be a rough or dry patch of skin, an ...
Topics: Research
For individuals with PWS, when it comes to food there is a lot of focus on hyperphagia (excessive hunger). However, another issue associated with mealtimes can be the physical act of eating and drinking itself. Many individuals with PWS struggle with...
Topics: Research
Dental issues in PWS can result from symptoms directly related to PWS, such as low saliva production, combined with challenges that individuals with special needs may have with maintaining good oral hygiene. Here, we focus on data from the Global PWS...
Topics: Research
As a rare disorder, PWS is most well-known to the medical community and general population for hyperphagia, or intense food-seeking behavior. However, family members, caregivers, and individuals with PWS know that behavior difficulties and mental hea...
Topics: Research
The Global PWS Registry launched in 2015 as a central repository of caregiver and patient entered data about living with PWS. The goals of the Registry are to better understand the full spectrum of PWS symptoms, expedite the completion of PWS clinica...
Topics: News
As individuals with PWS grow up into young adulthood and age into mid-life years, some continue to live with parents or other family, while others reside in group home or supported living situations. Here, we focus on data from the Global PWS Registr...
The Global PWS Registry continues to grow and strengthen as a valuable resource and research tool for the PWS community. The Registry currently has 1,846 participants. Over the past 12 months (July 2020-July 2021), the Registry has grown by over 12% ...
Topics: Research
Individuals with PWS suffer from a variety of digestive and gastrointestinal issues (GI), some of which can lead to surgery. Here, we focus on data from the Global PWS Registry to provide information on the prevalence of gastroparesis (delayed stomac...
Topics: Research
