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Foundation for Prader-Willi Blog | Research

Visiting PWS Researchers Inspires Hope

A special contribution by guest blogger Lisa Matesevac This summer, my family made our annual 15-hour trek to visit family in Buffalo, NY.  This was a much-needed reprieve for our family as Evan, our teenage son with PWS, was recovering from recent s...

Topics: Research

Study Sheds Light on Temper Outbursts in Prader-Willi Syndrome

Temper outbursts are a common challenge for many people with Prader-Willi syndrome. The published study "The characteristics of temper outbursts in Prader-Willi syndrome" sheds light on temper outbursts in PWS. Drs. Rice, Einfeld and Woodcock, all ve...

Topics: Research

Learnings from the Global PWS Community at the 2022 IPSWO Conference

In July 2022, FPWR’s Executive Director Susan Hedstrom, Director of Research Programs Theresa Strong, and Lauren Schwartz, FPWR’s leader of the Mental Health & Behavior Research Programs, attended the International Prader-Willi Syndrome Organisat...

Topics: Research

2022 PWS Research Symposium and Family Conference

This September 29 - October 1, parents, caregivers and medical professionals from across the country will once again be coming together to connect, learn, and be inspired at the Foundation for Prader-Willi Research’s Annual Research Symposium and Fam...

Topics: Research, Parents, Learning

PWS Clinical Trials Alert

  FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits while others can be completed remotely.  Some trials are testing new drugs while others are intervention ...

Topics: Research

D-dimer Study Yields Important Findings on PWS and Blood Clots

People with PWS have a higher risk for developing blood clots than the general population, but the risk is poorly understood. A recent study explored whether testing for a protein called D-dimer could be an informative tool for predicting blood clot ...

Topics: Research

People With PWS Share Their Hopes and Struggles In New Study

A tremendous amount of work has been done by The PWS Clinical Trials Consortium to understand and document the views of Prader-Willi syndrome families. Now, a new study validates what PWS caregivers have reported, by sharing first-person perspectives...

Topics: Research

Recommendations for Management of Sex Hormones in Adults With PWS

Two new papers from an international group of PWS expert physicians outline the clinical experience and provide recommendations for sex hormone replacement therapy in adult males and females with PWS.

Topics: Research

Insights Into the Sleep, Seizures, and Psychiatric Behaviors in PWS

A newly published paper examines sleep disorders, seizures, and psychiatric concerns in PWS. Thanks to almost 900 PWS families who completed multiple surveys in the Global PWS Registry, the study provides a great deal of valuable data and new insight...

Topics: Research