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Global PWS Registry

Newborn baby sleeping in a hospital bassinet, swaddled in a blanket with a feeding tube secured to their cheek.

New Neonatal Caregiver Survey Now Available in the Global PWS Registry

September 2, 2026

The first days and weeks after a baby is born can be overwhelming for any family. For families of babies with Prader-Willi syndrome (PWS), those early days may come with additional challenges - including feeding difficulties, an unexpected diagnosis, time

Young child smiling while sitting in a small backyard splash pool with colorful floating toys

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

July 8, 2026

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 Global PWS Registry helps

Celebrating the Strengths of People with Prader-Willi Syndrome

May 13, 2026

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. People with Prader-Willi syndrome are often described by caregivers as

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

April 8, 2026

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. A small scratch, scab, or bug bite can quickly turn into a wound that is difficult

PWS Registry Data: Dermatology

March 16, 2026

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

PWS Registry Data: 70% Report Sleep Issues In PWS

February 12, 2026

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

Top 10 Learnings from the Global PWS Registry

June 24, 2025

Thanks to nearly 2,000 participants completing a collective 61,795 surveys, the Global PWS Registry continues to be a vital resource for the PWS community—adding to our body of knowledge, improving how we care for our loved ones, and helping inform

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

June 9, 2025

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. Through our PATH for PWS study, families shared their lived experiences with

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

December 2, 2022

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

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