Category: Medical

Mental Health Awareness in Individuals with Prader-Willi Syndrome: Finding and Educating a Mental Health Professional (Part Two in a Series)

Finding a mental health professional who has experience working with individuals with Prader-Willi syndrome can be challenging.  The following are some suggestions to help you with your search: Talk to your primary care provider. She or he might be able to recommend one or more clinicians who are familiar with PWS. Call your state...

September Is Newborn Screening Awareness Month

What is newborn screening? Newborn screening is one of the most successful public health programs ever enacted, saving thousands of lives over the past 50 years. Newborn screening allows physicians to catch rare genetic conditions at birth and start treatment almost immediately following birth; it enables efficient diagnosis and access to treatments that can...

National Childhood Obesity Week

With childhood obesity presenting a significant threat to child health, the American Academy of Pediatrics (AAP) is recognizing National Childhood Obesity Awareness Month during the month of September. Early recognition and treatment of obesity has advantages. As we know in the PWS community, it is a daily struggle for most of our families. The...

Siblings and Food

Food restrictions in the home, although necessary for the safety and health of the family member with Prader-Willi Syndrome (PWS), can negatively impact siblings. The constant need to lock food adds intense stress and worry to siblings on several levels. For example, if the sibling forgets to lock access to food, this could result...

Prader-Willi Syndrome Association | USA and the Foundation for Prader-Willi Research Partner for Telehealth Needs Assessment

Prader-Willi Syndrome Association | USA (PWSA | USA) and the Foundation for Prader-Willi Research (FPWR) have partnered to conduct a study to measure interest in telehealth as a way of increasing access to care from Prader-Willi syndrome specialists. In addition, the project aims to better understand the demographic makeup of the Prader-Willi syndrome (PWS)...

Prader-Willi Syndrome and Gastroparesis

There is little evidence in the literature regarding the incidence of gastroparesis in PWS and how it affects families in the PWS community. Within the Global PWS Registry, 13% of participants have been diagnosed with gastroparesis (N=739). Of those with gastroparesis, more than half were diagnosed under age 10. The severity of gastroparesis reported...

Surviving Teletherapy

If you have a loved one who has Prader-Willi syndrome (PWS), you have no doubt tried some sort of teletherapy due to the Coronavirus pandemic. While some individuals have taken easily to this new way of interacting, many are finding it difficult. If your loved one falls in the latter category, a few suggestions...

Soleno Therapeutics Announces Top-line Results from Phase III Trial of DCCR for Treatment of Prader-Willi Syndrome

Though the study did not meet statistical significance for Primary Endpoint, significant improvements were seen in a prespecified subgroup with severe hyperphagia. Significant positive changes were also seen in two of three key secondary endpoints. Interim analysis of Ongoing Extension Study (C602) showed further reductions in hyperphagia of 48% after six months of DCCR...

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