Foundation for Prader-Willi Blog | Global PWS Registry

When Will My Child Reach Milestones? A Look at Development in PWS

Families affected by Prader-Willi syndrome (PWS) often have questions about their child’s development and what they can expect throughout their child’s journey. While every individual with PWS follows their own unique path, data collected through the...

July 8, 2026 Read More

Topics: Research, Global PWS Registry

Celebrating the Strengths of People with Prader-Willi Syndrome

When people think about Prader-Willi syndrome (PWS), conversations often focus on the challenges. But just as important—and too often overlooked—are the strengths and positive attributes that define individuals with PWS.

May 13, 2026 Read More

Topics: Global PWS Registry

Skin Picking in Prader-Willi Syndrome: Why It Happens and What Can Help

Skin picking is a common and challenging behavior seen in people with Prader-Willi syndrome (PWS), and for many families, it can be incredibly distressing.

April 8, 2026 Read More

Topics: Research, Global PWS Registry

PWS Registry Data: Dermatology

When it comes to dermatological or skin issues in PWS, the first things that may come to mind are sensitivity to the sun due to fair skin and skin picking. However, there are a variety of additional skin-related concerns for individuals with PWS.

March 16, 2026 Read More

Topics: Research, Global PWS Registry

PWS Registry Data: 70% Report Sleep Issues In PWS

Sleep is a common challenge among people with PWS. Whether it is daytime sleepiness, getting up at all hours of the night, early waking, or another sleep-related issue, sleep challenges not only affect the individual with PWS but the entire family. T...

February 12, 2026 Read More

Topics: Research, Global PWS Registry

Global PWS Registry Supports 1st FDA-Approved Treatment for People with PWS

Behind the recent FDA approval of the first treatment for hyperphagia in PWS is a powerful story of patient data and community collaboration—driven by the Global PWS Registry.

June 9, 2025 Read More

Topics: News, Global PWS Registry

PWS Registry Data: Living Situations for People With PWS Change As They Get Older [INFOGRAPHIC]

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...

December 2, 2022 Read More

Topics: Global PWS Registry

PWS Registry Data: Scoliosis in PWS [INFOGRAPHIC]

Physical activity and exercise are an important part of care for individuals with PWS. However, this can be difficult due to poor muscle tone and orthopedic issues. Many individuals require bracing, casting, and or surgery for spinal issues. Here, we...

March 21, 2022 Read More

Topics: Research, Global PWS Registry

PWS Registry Data: GI Issues in Prader-Willi Syndrome [INFOGRAPHIC]

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...

June 18, 2021 Read More

Topics: Research, Global PWS Registry

Foundation for Prader-Willi Blog | Global PWS Registry

Categories

When Will My Child Reach Milestones? A Look at Development in PWS

Celebrating the Strengths of People with Prader-Willi Syndrome

Skin Picking in Prader-Willi Syndrome: Why It Happens and What Can Help

PWS Registry Data: Dermatology

PWS Registry Data: 70% Report Sleep Issues In PWS

Global PWS Registry Supports 1st FDA-Approved Treatment for People with PWS

PWS Registry Data: Living Situations for People With PWS Change As They Get Older [INFOGRAPHIC]

PWS Registry Data: Scoliosis in PWS [INFOGRAPHIC]

PWS Registry Data: GI Issues in Prader-Willi Syndrome [INFOGRAPHIC]

About FPWR

Main Menu

Our Mission

Contact Us