FPWR Blog

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Global PWS Registry Supports 1st FDA-Approved Treatment for People with PWS
Behind the recent FDA approval of the first treatment for hyperphagia in PWS is a powerful story of... Read more >
Source: FPWR Blog | Published: June 6 2025 - 03:52 PM
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From NICU to Leading the Walk: Miles’ Story and the Power of One Small Step
When Carolyn’s son Miles was diagnosed with Prader-Willi syndrome, she faced a new world of... Read more >
Source: FPWR Blog | Published: June 6 2025 - 11:39 AM
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Inside the Cell: MAGEL2 Mislocalization and What It Means for SYS Research
What if the key to treating a rare genetic condition lies not just in whether a protein is... Read more >
Source: FPWR Blog | Published: May 5 2025 - 10:00 AM
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RareCAP: A New Resource Bringing Expert PWS Care Within Reach
Finding a doctor who understands Prader-Willi syndrome (PWS) isn’t always easy—especially in urgent... Read more >
Source: FPWR Blog | Published: May 5 2025 - 10:00 AM
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FPWR Announces 1st Round of 2025 Grants
We are pleased to announce the recipients of our first round of grants for 2025, totaling... Read more >
Source: FPWR Blog | Published: May 5 2025 - 01:34 PM
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Clinical Trials Matter: Three PWS Families Share Their Views
Harmony Biosciences recently met with three families impacted by Prader-Willi syndrome (PWS) to... Read more >
Source: FPWR Blog | Published: May 5 2025 - 05:00 AM
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Can We Treat Circadian Rhythm Disruption in PWS? New Research Offers Hope
Human beings have adapted to our planet's 24-hour days. The body goes through daily cycles that... Read more >
Source: FPWR Blog | Published: May 5 2025 - 09:00 AM
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We Need 15 Minutes of Your Time: Help Advance PWS Treatments by Joining the MY-HQ Project
We’re excited to share an important opportunity for families in the Prader-Willi syndrome (PWS)... Read more >
Source: FPWR Blog | Published: May 5 2025 - 09:00 AM
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Summary From the PWS Community Town Hall: Sharing Experiences with VYKAT XR
On Tuesday, April 22, PWSA | USA and FPWR offered a PWS Community Town Hall for caregivers and... Read more >
Source: FPWR Blog | Published: April 4 2025 - 05:30 AM
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The FPWR Therapeutic Accelerator Program: Bridging Research and Development
Much of the research supported by FPWR is considered “basic science” or “discovery” research. The... Read more >
Source: FPWR Blog | Published: April 4 2025 - 09:00 AM
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May is #PWSAwareness Month!
Each May, our community comes together to shine a light on Prader-Willi syndrome and accelerate the... Read more >
Source: FPWR Blog | Published: April 4 2025 - 05:35 AM
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Growing Up Alongside PWS: The Hidden Struggles and Strengths of Siblings
Lauren Schwartz-Roth, clinical psychologist and mom to a young adult with PWS, shares insights on... Read more >
Source: FPWR Blog | Published: April 4 2025 - 04:30 AM
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DCCR (VYKAT XR) Approved for Treating Hyperphagia in Prader-Willi Syndrome
We are thrilled to share that the FDA has approved the first treatment for hyperphagia (excessive... Read more >
Source: FPWR Blog | Published: March 3 2025 - 02:29 PM
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Announcing the Launch of the Global Schaaf-Yang Syndrome Registry
FPWR is pleased to announce the launch of the Global Schaaf-Yang Syndrome Registry, an online... Read more >
Source: FPWR Blog | Published: March 3 2025 - 12:29 PM
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