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Graphic reading “Constipation in PWS” with the subtitle “New research reveals signs families should know” on a blue background.

Constipation in PWS: New Research Highlights What Parents Should Know

September 9, 2026

Constipation is a common concern for people with Prader-Willi syndrome (PWS), but until now, there has been very little research describing how often it occurs or what it looks like in children and young adults with PWS. A new study

Built to Last: Celebrating One Small Step Legacy Hosts

September 3, 2026

Behind every One Small Step is an unsung hero. Following up with one more sponsor. Filling prize baskets at the kitchen table. Wondering if anyone will actually show up. Arriving before sunrise to unload tables. Most people never see those

Newborn baby sleeping in a hospital bassinet, swaddled in a blanket with a feeding tube secured to their cheek.

New Neonatal Caregiver Survey Now Available in the Global PWS Registry

September 2, 2026

The first days and weeks after a baby is born can be overwhelming for any family. For families of babies with Prader-Willi syndrome (PWS), those early days may come with additional challenges - including feeding difficulties, an unexpected diagnosis, time

Graphic announcing “A Letter to the PWS Community from Neurocrine Biosciences,” featuring a preview of the Neurocrine letter and FPWR and Neurocrine logos.

Neurocrine Biosciences Shares Letter with the PWS Community

September 1, 2026

Neurocrine Biosciences has shared a letter with the Prader-Willi syndrome (PWS) community. Earlier this year, Neurocrine Biosciences acquired Soleno Therapeutics and became the new steward of VYKAT® XR (diazoxide choline) extended-release tablets. Kyle Gano, CEO of Neurocrine, has shared a

Graphic reading “Research Update: Once-Weekly Growth Hormone?” with supporting text noting a new study raises questions about BMI and what once-weekly GH could mean for PWS.

New Study Raises Questions About Long-Acting Growth Hormone for People with PWS

August 19, 2026

For decades, daily growth hormone injections have been an important part of care for people with Prader-Willi syndrome (PWS), helping improve growth, body composition, muscle mass, and overall health. More recently, long-acting growth hormone (LAGH) formulations have been developed to

Balancing Benefit, Risk, and Access to VYKAT XR

August 17, 2026

As the PWS community gains more real-world experience with VYKAT XR, important conversations are taking place about how to balance the medication’s potential benefits with known risks. FPWR believes both deserve careful consideration. Recent reports of 7 deaths and more

Graphic reading “Clinician Guidance: VYKAT XR Safety Considerations for Real-World Use,” with supporting text about risk factors, monitoring, and treatment safety.

VYKAT XR: Clinician Recommendations for ‘Real World’ Use and Monitoring Side Effects

August 11, 2026

Since VYKAT XR became available in March 2025, our community has begun to gain valuable real-world experience using the medication. As expected with any newly approved therapy, new safety information continues to emerge. This includes reports of edema (fluid retention),

A young woman and her mom look at a laptop together at a table.

Can We Improve Cognition in People with Prader-Willi Syndrome?

August 5, 2026

Researchers are increasingly focusing on cognition in Prader-Willi syndrome (PWS), including attention, memory, planning, and flexible thinking. FPWR recently convened international experts to identify the best ways to measure cognitive improvements and prepare for future clinical trials of therapies designed

Kyle smiles at the camera while seated at a table with a bouquet of flowers in front of him.

When the Impossible Becomes Everyday: A PWS Story

July 24, 2026

By Guest Blogger Tammy Galloway I have started this story many times, and each time I find myself focusing on different parts of our journey. In the early days, doctors told us what my son Kyle would likely never do.

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