New call-to-action
New call-to-action
New call-to-action

Foundation for Prader-Willi Blog | Research (13)

Categories

New Paper Provides Data on Vision Problems in People with PWS

Thanks to the participation of so many in our community, our team was able to share the largest study ever on eye problems in PWS, using data from the Global PWS Registry. The paper “Incidence of strabismus, strabismus surgeries, and other vision con...
August 16, 2021 Read More

Topics: Research

PWS Clinical Trial Opportunity: Pitolisant

A phase 2 study of Pitolisant is enrolling patients ages 6 to 65 years old to evaluate the safety and impact of an investigational medicine, Pitolisant, for excessive daytime sleepiness, cognition, and behavioral function in people with PWS. A live w...
August 3, 2021 Read More

Topics: Research

New Paper Provides Definitions of Common PWS Behavioral Features

As any parent of loved ones with PWS can attest, defining the spectrum of symptoms of PWS can be a challenge! To help solve that problem, a paper has been published that provides consistent descriptions of common PWS–related behaviors. The paper prov...
July 13, 2021 Read More

Topics: Research

New PWS Research Compares Mini-Brains In A Dish

Dr. Gua-Li Ming from the University of Pennsylvania has developed a new cellular model of PWS: a 3D organoid that mimics the arcuate nucleus found in the hypothalamus. This organoid, derived from stem cells with PWS, was compared to a typically devel...
July 6, 2021 Read More

Topics: Research

Study Confirms Growth Hormone for PWS Does Not Worsen Scoliosis

A new long-term study on scoliosis and growth hormone has been published. The publication, Effects of 8 Years of Growth Hormone Treatment On Scoliosis In Children With Prader-Willi Syndrome shows that 8 years of growth hormone treatment has no advers...
July 1, 2021 Read More

Topics: Research

PWS Registry Data: GI Issues in Prader-Willi Syndrome [INFOGRAPHIC]

Individuals with PWS suffer from a variety of digestive and gastrointestinal issues (GI), some of which can lead to surgery. Here, we focus on data from the Global PWS Registry to provide information on the prevalence of gastroparesis (delayed stomac...
June 18, 2021 Read More

Topics: Research

Pitolisant for Excessive Daytime Sleepiness in PWS [2020 CONFERENCE VIDEO]

In this 30‑minute video, Albena Patroneva from Harmony Biosciences explains what pitolisant is and how it works, and describes Harmony's Phase 2 clinical trial of pitolisant in patients with PWS. The session includes Q&A from participants in the ...
June 15, 2021 Read More

Topics: Research

Next Steps In PWS Advocacy

For more than a decade, FPWR has partnered with families and other PWS groups (PWSA|USA, IPWSO) to advocate for PWS treatments. We've worked diligently to build resources that address the FDA’s call for patient experience data, demonstrating high dis...
June 11, 2021 Read More

Topics: Research

FPWR Announces First Round of 2021 Grant Awards for PWS Research [VIDEO]

The Foundation for Prader-Willi Research announces our first round of Research Awards in 2021 totaling $359,100. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and to that end, ha...
June 9, 2021 Read More

Topics: Research

About FPWR

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).

4star120x60

NORD_MembershipLogo_Platinum_2021

excellence-in-giving-logo

Main Menu

Our Mission

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

Contact Us

Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

FPWR
440 N Barranca Ave #3620
Covina, CA 91723

Copyright © 2020. All Rights Reserved. Terms of Use. Privacy Policy. Copyright Infringement Policy. Disclosure Statement.