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FPWR Blog

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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

Learning from Every Patient: The PWS-CLIC Starts a Shared Database

The PWS-Clinical Investigation Collaborative (PWS-CLIC) is a network of PWS clinical experts, formally established in 2021. The work of the PWS-CLIC is supported by FPWR. This network has expanded over the past two years and now includes 25 clinical ...
March 5, 2024 Read More

Topics: Research, PWS People

What Is the PWS CLIC [2023 Conference Video]

In this 10‑minute video, Caroline Vrana-Diaz, FPWR Research Project Coordinator, explains how the PWS CLIC is helping to improve standards of care for people with Prader-Willi syndrome.
March 1, 2024 Read More

Topics: Clinical Issues, Research

Understanding the Impact of Schaaf-Yang Syndrome from Caregiver Insights

Schaaf-Yang syndrome (SYS) is an ultra-rare disorder that was first identified in 2013. It is caused by mutations in the MAGEL2 gene, a gene that is also deleted or inactivated in Prader-Willi syndrome (PWS). Because SYS is a relatively newly describ...
February 21, 2024 Read More

Topics: Research, Parents, SYS

Share Your Rare: HopeFull Highlights

As Rare Disease Day approaches on February 29, we want to spotlight the extraordinary qualities of our children with Prader-Willi syndrome, celebrating their unique passions and contributions to the world. Our objective is simple: to inspire hope. We...
February 19, 2024 Read More

Topics: Stories of Hope

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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