Get Connected, Stay Connected

Stay up to date on the latest in PWS Research

Research is progressing faster than ever before! Join our community and stay up to date on the latest research investments, discoveries and clinical trials! Each of these mailing lists offer different content - sign up for all 3!


This monthly e-newsletter will get you up to date on highlighted blogs and news.


Receive daily, weekly or monthly FPWR blog summaries - the frequency is up to you!


This monthly alert will provide you with the latest trial opportunities and updates.

Get Social - Facebook & Twitter

Sophie Rodriguez 1 (1)We use social media to spark discussions about research, treatments and events and, of course, to connect with our families. You can follow us on Facebook or Twitter or join the Foundation's FPWR Group page.



FPWR YouTube Channel

FPWR provides a selection of recorded updates and resources on our FPWR Youtube Channel. Here are just a few our highlighted videos:

Our channel also includes presentations from our annual conference with topics on behavior, diet, standards of care and more.





Global PWS Registry

The Global PWS Registry is a comprehensive and secure database, compliant with U.S. Health information privacy laws and FDA regulations. We invite you to register and participate today! Data from the registry can be used in de-identified aggregate form to help advance the understanding and treatment of PWS. Learn more >> 


Global PWS Registry  |  Enroll or Update