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FPWR Blog

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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 and PWSA|USA Request Regulatory Flexibility & Review of NDA for Intranasal Carbetocin

In a continuation of our joint advocacy efforts supporting the full review of potential drugs for PWS, FPWR and PWSA | USA have submitted a petition letter to the FDA requesting that they apply regulatory flexibility and to review a New Drug Applicat...
June 10, 2021 Read More

Topics: News

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

FPWR and PWSA | USA Announce Upcoming Meeting with FDA

With your support, FPWR and PWSA | USA have been granted a meeting with the FDA, which will take place via teleconference later this month. This small, non-public meeting will allow FPWR and PWSA | USA to connect first-hand with the FDA staff and sha...
June 8, 2021 Read More

Topics: News

Hyperphagia Leads to Increased Caregiver Burden Across the Lifespan

Hyperphagia is a life-long concern for individuals with PWS and their caregivers. In a recently published study conducted by FPWR and the PWS Clinical Trials Consortium, we found caregiver burden increases as the person with PWS gets older, and as hy...
May 21, 2021 Read More

Topics: Research

Optimal Nutrition for People With PWS [2020 CONFERENCE VIDEO]

In this 60‑minute workshop, Melanie Silverman explains optimal nutrition for children and adults with Prader‑Willi Syndrome. She includes online resources and gives tips on how to handle feeding times and varying diets. The session includes Q&A f...
May 17, 2021 Read More

Topics: Research

FPWR Launches First of Kind PWS Genome Project

FPWR is pleased to announce the launch of an exciting new research study: the PWS Genome Project. This study will provide new insight into how variations across the entire genome influence the range and severity of symptoms in people with Prader-Will...
May 14, 2021 Read More

Topics: Research

What Does Effective PWS Treatment Advocacy Look Like?

Last fall, the PWS community was excited to see two drugs complete Phase III clinical trials: both DCCR and Carbetocin hold promise in addressing hyperphagia, a top priority for PWS families. Both studies had positive results, but neither reached sta...
May 7, 2021 Read More

Topics: Research

Orthopedic Challenges in Prader‑Willi Syndrome [2020 CONFERENCE VIDEO]

In this 60‑minute workshop, Dr. Van Bosse discusses the diagnosis and treatment of orthopedic challenges in PWS and how in his practice of pediatric orthopedic surgery since 1994, he has helped hundreds of patients with PWS. The session includes Q&am...
May 3, 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).

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Our Mission

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

FPWR
440 N Barranca Ave #3620
Covina, CA 91723

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