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Foundation for Prader-Willi Blog | Research

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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

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

The Global PWS Registry recently launched a survey to capture the impact of COVID-19 on PWS families. The results reveal families' challenges, concerns, and successes in this unprecedented time.
August 21, 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

Carbetocin for PWS: Phase 3 Clinical Trial Results Announced

Today, Levo Therapeutics announced the promising results of their Phase 3 Clinical Trial of carbetocin for treating symptoms of PWS.  
August 6, 2020 Read More

Topics: Research

Facial and Voice Processing Issues Affect Social Interactions in PWS

Children and adults with PWS frequently show impairments in their social interactions. New research on how people with PWS process visual and auditory cues could lead to social interventions that help.
July 31, 2020 Read More

Topics: Research

Hip Dysplasia in Babies with PWS May Not Need Aggressive Treatment

A new study looking at the long-term consequences of early hip dysplasia does not support an aggressive approach to treating hip dysplasia in babies with PWS. The paper provides useful guidance and suggestions for physicians who are evaluating babies...
July 22, 2020 Read More

Topics: Research

Scoliosis In PWS Covered In New Publication

Parents may want to download and keep a copy of a newly available review on scoliosis in PWS. The paper comes from Dr. Harold van Bosse, an orthopedic surgeon at Shriner’s Hospital with extensive experience in caring for kids with PWS and scoliosis, ...
July 10, 2020 Read More

Topics: Research

Study Supports Eye Tracking to Measure Hyperphagia in PWS

Results have now been published on a study looking at eye tracking and hyperphagia in younger children with PWS (ages 3-11 years old). The study found that children with PWS who had higher hyperphagia questionnaire scores and more advanced nutritiona...
July 2, 2020 Read More

Topics: Research

Evidence For Accelerated Aging In Young Adults with PWS

Two recent papers address an area that has received very limited attention to date, aging in PWS. Both papers point to differences in aging in young adults with PWS compared to typical individuals and suggest that this is an area that is in need of f...
June 23, 2020 Read More

Topics: Research

PWS Registry Data: Dermatology [INFOGRAPHIC]

When it comes to dermatological or skin issues in PWS, the first things that may come to mind are sensitivity to the sun due to fair skin, and skin picking. However, there are a variety of additional skin-related concerns for individuals with PWS. Da...
June 17, 2020 Read More

Topics: Research

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The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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