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FPWR Blog

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May is #PWSAwareness Month | We Have Your PWS Awareness Resources

May is PWS Awareness Month. A time to raise awareness and advance research so we may find new treatments for Prader-Willi syndrome (PWS). By coming together this month, we can amplify our impact and propel treatments for PWS forward faster. Since 201...
April 24, 2024 Read More

Topics: News

Clinical Trials Panel [2023 Conference Video]

In this one hour and 8-minute video, Dr. Theresa Strong, FPWR’s Director of Research Programs, explores PWS clinical trials that are already underway or enrolling participants.
April 23, 2024 Read More

Topics: Research

PWS Registry Data: Skin Picking in PWS [INFOGRAPHIC]

Individuals with PWS often exhibit a variety of self-injurious behaviors, and one of the most common of these is skin picking. Individuals typically start with a fixation on some imperfection in the skin. This can be a rough or dry patch of skin, an ...
April 9, 2024 Read More

Topics: Research

PWS Clinical Trials Alert

FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits while others can be completed remotely. Some trials are testing new drugs while others are intervention (no...
April 9, 2024 Read More

Topics: Research

Sleep and Schaaf-Yang Syndrome [2023 CONFERENCE VIDEO]

In this 74‑minute video, Dr. Joanna Wrede, a pediatric sleep neurologist at Seattle Children’s Hospital, explains how sleep disorders are identified and treated in children with Schaaf-Yang syndrome.
April 4, 2024 Read More

Topics: Research

Harmony Biosciences Initiates Global Phase 3 Study of Pitolisant: TEMPO!

Harmony Biosciences has initiated its Phase 3 study of Pitolisant and is now enrolling individuals with Prader-Willi syndrome ages 6 and up who struggle with excessive daytime sleepiness. Two clinical trial sites are already open and ready to begin s...
April 3, 2024 Read More

PWS Clinical Trial Webinar: NNZ-2591

Neuren Pharmaceuticals is now enrolling children with PWS in a phase 2 clinical trial to measure the safety and efficacy of NNZ-2591. NNZ-2591 is a novel synthetic analog of cyclic glycine-proline (cGP), a metabolite of IGF-1. NNZ-2951 regulates the ...
March 26, 2024 Read More

Topics: Clinical Trials Opportunities

Top 10 Reasons to Attend the 2024 FPWR Family Conference

Join us September 27–28 for our annual gathering of movers, shakers, thinkers, and doers at this year’s FPWR Family Conference! It's a unique opportunity to connect, learn, and grow alongside like-minded individuals who are dedicated to making a diff...
March 20, 2024 Read More

Topics: News

Behavior and Mental Health - Age 5 and Up [2023 CONFERENCE VIDEO]

In this 30‑minute video, Patrice Carroll, Elizabeth Roof, and Dr. Deepan Singh discuss strategies for addressing behavioral and mental health challenges in children aged 5 and up with Prader-Willi syndrome.
March 14, 2024 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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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

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Covina, CA 91723

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