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FPWR Blog

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

​​Why I’m Crossing the Globe for FPWR’s Annual Conference

A special contribution by guest blogger Will Greene When our son Ari was diagnosed with Prader-Willi syndrome in January 2022, FPWR emerged as a beacon of hope in our caregiver journey. That’s why I’m making the long trip from Singapore to Chicago to...

Topics: News

Top 10 Reasons to Attend the 2022 PWS Family Conference

Join us September 30-October 1 for our annual gathering of movers, shakers, thinkers, and doers at this year’s FPWR Family Conference!  Here are the top 10 reasons you need to be there:

Topics: News

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

FPWR 2022 Conference Speakers Announced

You won’t want to miss these speakers at the 2022 FPWR Family Conference this September and October in Chicago, IL. Are you ready to join like-minded game-changers with direct access to the people, knowledge, and inspiration you need to help your chi...

Topics: News

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

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