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PWSA Blog

Calling Indiana PWS Families!

The Indiana Medicaid Drug Utilization Review (DUR) Board Meeting will be meeting October 17, 2025, starting at 10:00 AM EST. Here’s how you can help: The Indiana Medicaid DUR Board needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS. One...

HERO Clinical Trial for ARD-101 Now Enrolling Open-Label Extension (OLE)

Earlier this year, Aardvark Therapeutics launched HERO, a global Phase 3 clinical trial investigating ARD-101, an innovative, orally administered treatment designed to help reduce hyperphagia (excessive hunger) and food-seeking behaviors in individuals with Prader-Willi syndrome (PWS). All patients who have completed treatment on the AVK-101-301 study through Week 12/End of Treatment will have the option to join...

Calling Missouri PWS Families!

The Missouri Rare Disease Advisory Council Meeting will be meeting October 8, 2025 from 10:30 AM – 2 PM CDT. Here’s how you can help: The Missouri Rare Disease Advisory Council needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS....

Understanding P&T Committees and DUR Boards

Why do P&T Committees and DUR Boards Matter for PWS Treatments? For families living with Prader-Willi syndrome, access to new therapies isn’t just about FDA approval. Once a drug is approved, there’s another critical step that determines whether patients can actually receive treatment: coverage decisions made by Pharmacy & Therapeutics (P&T) Committees and Drug Utilization...

Acadia Shares Results of Phase 3 Carbetocin Trial: Primary Endpoint Not Met

On Wednesday, September 24, 2025, Acadia Pharmaceuticals shared an update on their Phase 3 COMPASS PWS trial, which evaluated intranasal carbetocin (ACP-101) for hyperphagia (excessive hunger) in children and adults with Prader-Willi syndrome (PWS). The trial did not meet its primary endpoint of improving scores on the Hyperphagia Questionnaire for Clinical Trials (HQ-CT) from baseline...

Affecting Sleep with PWS

Question: Female, 22 years old, Deletion subtype My daughter is not sleeping…day or night. She sleeps maybe 2 hours at night and no naps. That means I don’t sleep. We have tried OTC and Ambien, and they don’t work. We need help, I am emotionally and physically exhausted. I will reach out to her psychiatrist...

Grandparent Perspectives

Many of our families are blessed to have grandparents in their lives. Some grandparents live close by and are able to help with the practicalities of raising someone with PWS, like doctor appointments, therpay visits, and babysitting or supervising so the main caergivers can have a break. Other parents live far away but find those...

Calling Alaska PWS Families

The Alaska Medical Assistance DUR Committee will be meeting virtually at 1 PM AKDT on Friday, Sept. 19, 2025.   Here’s how you can help: The Alaska Drug Utilization Review Board needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger) in PWS. One...

Calling Montana PWS Families

The Montana Medicaid Drug Use Review Board will be meeting virtually from 1 PM – 5 PM MT on Wednesday, Sept. 17, 2025.   Here’s how you can help: The Medicaid Drug Use Review Board needs to hear directly from you – the parents, caregivers, and family members who understand the real-life impact of hyperphagia (excessive hunger)...

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