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The Global PWS Registry Needs YOU to Update Your Surveys!

The PWS Registry needs you! Update your surveys TODAY and be entered to win a $50 Amazon eGift card!

2021 brings new opportunities to learn even more about PWS and improve the health of those living with PWS. De-identified data from the Global PWS Registry is actively being used to help PWS physicians understand medical problems in PWS, provide scientists at the FDA with a better understanding of the needs of the PWS community, and accelerate clinical trials.

The Global PWS Registry is one of the community’s most effective tools to inform research and clinical care. There are currently over 2000 families from around the world enrolled in the Registry and our knowledge grows with every survey completed! Up to date entries from each participant are critical to the strength of this powerful community tool! By updating your current surveys and/or completing new surveys, you ensure that the most current information is available to researchers and shared back to the PWS community. Go to to get started today!  

Visit The Registry & Complete Your Survey

Update your surveys TODAY and be entered to win a $50 Amazon eGift card!

For every 5 surveys updated or new surveys completed in the Global PWS Registry from the list below you will be automatically entered into a drawing for 1 of 10 $50 Amazon eGift cards.

  • Gastrointestinal History
  • Dental History
  • Orthopedic History
  • Endocrinological History
  • Pulmonary History
  • Hippo, Psycho and Behavioral Therapies
  • Speech, Occupational and Physical Therapies
  • Psychological and Mental Health
  • Sleep History
  • Contact Information
  • Behavior
  • Diagnosis – Please upload Genetic report if available
  • Sociodemographic and Socioeconomic
  • Developmental Milestones
  • Sexual and Reproductive History
  • Neurologic History
  • Education and Employment
  • Well Being
  • Research Trials
  • Participant Demographics

If you update/complete ALL 20 surveys listed above, you will receive 5 BONUS ENTRIES into the drawing for a gift card. Surveys must be updated/completed by January 31, 2021 to be eligible for the drawing for 1 of 10 $50 Amazon eGift cards. Drawing to be held on February 15, 2021. Winners will be notified via email.

To begin, go to and click on the ‘Updatable’ tab to update your surveys. To complete NEW surveys, click the ‘Initial Surveys’ tab to see a list of all available surveys not yet completed.  


Visit The Registry & Complete Your Survey

If you are creating an account in the Global PWS Registry for the first time and have questions or have questions about your existing account, please email OR for help. You can also call (760)420-5878 to speak with an FPWR team member.


Susan Hedstrom


Susan Hedstrom is the Executive Director for the Foundation for Prader-Willi Research. Passionate about finding treatments for PWS, Susan joined FPWR in 2009 shortly after her son, Jayden, was diagnosed with Prader-Willi Syndrome. Rather than accepting PWS as it has been defined, Susan has chosen to work with a team of pro-active and tireless individuals to accelerate PWS research in order to change the future of PWS. Inspired by her first FPWR conference and the team of researchers that were working to find answers for the syndrome, she joined the FPWR team in 2010 and led the development of the One SMALL Step walk program. Under Susan’s leadership, over $15 million has been raised for PWS related research.