Foundation for Prader-Willi Blog

2020 PWS Research Publications

Despite the enormous challenges of 2020, PWS scientists and clinicians persevered and made tremendous headway in understanding PWS, advancing new treatments, and improving care. New insights into the biology of PWS have identified new targets for dru...

December 23, 2020 Read More

Topics: Research

Return of Results: CARE-PWS by Levo Therapeutics [2020 CONFERENCE VIDEO]

In this 36-minute Return of Results session, David Ryman of Levo Therapeutics provides insights into the Phase 3 clinical trial of carbetocin, including next steps for making the drug available to treat hyperphagia and anxiety behaviors in PWS. This ...

December 15, 2020 Read More

Topics: Research

What's Happening in PWS Research [2020 CONFERENCE VIDEO]

Join Dr. Theresa Strong and the FPWR Research Team to learn more about what is happening in PWS research. In this 68-minute video, the FPWR Research Team members summarize highlights, recent findings and the latest on PWS research and available resou...

November 25, 2020 Read More

Topics: Research

PWS Registry Data: Impact of COVID-19 on PWS Families [INFOGRAPHICS]

Originally published in August 2020, this blog has been updated with significant new data. The Global PWS Registry launched a survey this summer to capture the impact of COVID-19 on PWS families, and how our community is navigating this unprecedented...

November 23, 2020 Read More

Topics: Research

PWS Clinical Trials Panel [2020 CONFERENCE VIDEO]

PWS clinical trials are taking place around the world to help us understand Prader-Willi syndrome and investigate new treatments. In this 60-minute video, Dr. Strong summarizes the drug development pathway, followed by trial representatives describin...

November 18, 2020 Read More

Topics: Research

November 15th Is International 15q Day

Together, the Foundation for Prader-Willi Research, Angelman Syndrome Foundation and Dup15q Alliance are raising awareness of the similarities between Angelman, Dup15q, and Prader-Willi syndromes.

October 22, 2020 Read More

Topics: Research

Changes In Weight and BMI In Adolescents and Adults with PWS

In this 6-minute video, Drs. Theresa Strong and Caroline Vrana-Diaz review data and findings from the PWS Weight Study conducted by the Foundation for Prader-Willi Research. This study has been published in the Orphanet Journal of Rare Diseases.

September 22, 2020 Read More

Topics: Research

FPWR and PWSA-USA Partner for Telehealth Needs Assessment

FPWR and the Prader-Willi Syndrome Association | USA (PWSA | USA) have partnered to conduct a study to measure interest in telehealth as a way of increasing access to care from Prader-Willi syndrome specialists. In addition, the project aims to bette...

August 12, 2020 Read More

Topics: Research