Foundation for Prader-Willi Blog

FPWR

The PWS Clinical Investigation Collaborative (PWS-CLIC): Advancing Care for Your Loved Ones

If your loved one has Prader-Willi syndrome (PWS), you know how important expert medical care is to managing the complexities of the condition. The good news is that a dedicated group of doctors has partnered with FPWR to create a nationwide network ...

January 22, 2026 Read More

Topics: Resource Development

Modafinil and Daytime Sleepiness in Prader-Willi Syndrome

Excessive daytime sleepiness (EDS) is one of those symptoms of Prader-Willi syndrome (PWS) that often does not get the attention it deserves. EDS can profoundly undermine success in older children and adults with PWS. It is hard to learn anything in ...

January 15, 2026 Read More

Topics: Therapeutic Development, Research, Research Blog, Sleep

Pivotal Study Results of VYKAT™ XR Published

Soleno Therapeutics has published results from its pivotal Phase 3 clinical study of VYKAT™ XR (diazoxide choline extended-release tablets, DCCR) in The Journal of Clinical Endocrinology and Metabolism, a peer-reviewed journal for endocrine and metab...

January 12, 2026 Read More

Topics: News

Your 2025 Impact: FPWR Fundraising Wrapped

Every breakthrough, every milestone, and every step forward in 2025 had one thing in common: our community. Because supporters like you showed up. You shared your story. You asked others to stand with you. And it mattered.

January 9, 2026 Read More

Topics: News

Global PWS Registry 2.0 Launches with New VYKAT Module

The Global PWS Registry is powered by the dedication of patients and families who share their PWS experiences. Each piece of data collected helps unlock insights that fuel scientific discoveries and treatment breakthroughs.

January 8, 2026 Read More

Topics: News

Are GLP-1s Safe and Effective for People with PWS?

You have probably heard of GLP-1 receptor agonists (GLP-1s). You may even know someone who has successfully lost weight using one of these popular medications. But what about their safety and effectiveness for people with Prader-Willi syndrome (PWS)?

January 6, 2026 Read More

Topics: Hunger Satiety, Obesity and Energy Balance, Research, PWS People

Pitolisant for Daytime Sleepiness in PWS: New Research Findings

Families and caregivers in the Prader-Willi syndrome (PWS) community whose loved one experiences excessive daytime sleepiness (EDS) know just how challenging it can be in daily life. Data from the Global PWS Registry show that 55% of participants exp...

December 23, 2025 Read More

Topics: Research

Positive Preliminary Results with Setmelanotide and Plans for Evaluation of RM-718 for PWS

Rhythm Pharmaceuticals has shared positive preliminary results from its exploratory Phase 2 trial of setmelanotide in people with PWS and announced, pending successful completion of this phase, plans to advance setmelanotide into a Phase 3 trial. Add...

December 18, 2025 Read More

Topics: News

Self-Care for Caregivers: Your Well-Being Matters

Caring for a child or adult with Prader-Willi syndrome (PWS) often means juggling medical appointments, behavior plans, daily routines, and the emotional ups and downs that come with them. Too often, caregivers put their own needs last — not because ...

December 9, 2025 Read More

Topics: Parents

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Recent Posts

The PWS Clinical Investigation Collaborative (PWS-CLIC): Advancing Care for Your Loved Ones

Modafinil and Daytime Sleepiness in Prader-Willi Syndrome

Pivotal Study Results of VYKAT™ XR Published

Your 2025 Impact: FPWR Fundraising Wrapped

Global PWS Registry 2.0 Launches with New VYKAT Module

Are GLP-1s Safe and Effective for People with PWS?

Pitolisant for Daytime Sleepiness in PWS: New Research Findings

Positive Preliminary Results with Setmelanotide and Plans for Evaluation of RM-718 for PWS

Self-Care for Caregivers: Your Well-Being Matters

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