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FPWR Blog

Science Fireside Chat (Q & A): [2018 Conference Video]

This blog is based on a presentation at the FPWR 2018 conference. You can watch the complete presentation by clicking on the embedded video. In case you don't have time to watch the full video, we've included a full transcript below. You can also wat...

Topics: Research Blog

Getting the Right IEP for Your Student With PWS: Lessons from a Principal

Are you a new parent to the Individualized Education Plan (IEP) process and seeking to understand the journey ahead? Or a veteran to the IEP process and seeking tips and strategies to ease the experience?

Topics: News

Schaaf-Yang Syndrome: What Do We Know? [2018 CONFERENCE VIDEO]

This blog is based on a presentation at the FPWR 2018 conference. You can watch the complete presentation by clicking on the embedded video. In case you don't have time to watch the full video, we've included a full transcript below. You can also wat...

Topics: Research Blog

UConn and FPWR Create Stem Cell Biobank for PWS

A new collaboration between UConn Health and the Foundation for Prader-Willi Research will create a centralized, high quality biobank of stem cells to help researchers better understand Prader-Willi syndrome.

What We Are Learning from the PATH for PWS Study

[Ed. note April 2, 2021: The PATH for PWS Study is no longer open for enrollment.] PATH for PWS: Paving the Way for Advances in Treatments and Health People with PWS are at a greater risk of health complications and serious medical events than indivi...

Topics: Research Blog

From the CEO's Desk: Working Together to Grow Our PWS Research Investment

Our team recently presented a summary of our 2018 programs and 2019 plans to the FPWR board of directors and, in reflection, 2018 was a great year of progress in PWS research!

Topics: News

PWS Research Symposium Highlights [2018 Conference Video]

This blog is based on a presentation at the FPWR 2018 conference. You can watch the complete presentation by clicking on the embedded video. If you don't have time to watch the full video, we've included a full transcript of the presentation below. Y...

Topics: Research Blog

PWS Registry Data: Friendships in PWS

Most people with PWS are social and enjoy spending time with family and friends. However, making and keeping friends can be difficult for people with PWS. Because of food issues, people with PWS often need supervision and monitoring, which can make i...

Topics: Research