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FPWR

New Project Seeks to Identify Characteristics that Predict Challenging Behaviors in PWS

February 7, 2025

Individuals with PWS often exhibit rigidity, obsessive-compulsive tendencies, emotional outbursts, as well as unusual thoughts and behaviors. However, the onset and severity of these behaviors vary among individuals with PWS depending on age, genetic subtype, and other factors. FPWR has

New Resource for Parents: Helping Siblings Thrive in a PWS Family

February 4, 2025

The challenges of Prader-Willi syndrome extend beyond the individual diagnosed to the entire family. Siblings growing up in a household with a person with PWS may need extra support to help them navigate their new normal and the unique family

Help Drive Progress: Become an Advocate Reviewer for PWS Research

January 28, 2025

A special contribution by guest blogger Will Greene. The future of PWS research depends on more than just scientists—it also needs the voices of parents, caregivers, and PWS advocates to guide meaningful progress. Becoming an Advocate Reviewer for FPWR is

Reflecting on 2024: A Year of Progress & Promise for the PWS Community

December 4, 2024

As 2024 draws to a close, we at the Foundation for Prader-Willi Research (FPWR) are reflecting on a year filled with progress, promise, and hope. This year’s achievements wouldn’t have been possible without the incredible dedication of our community—researchers, families,

Recap of the PWS-CLIC Meeting in Atlanta

November 26, 2024

The PWS-Clinical Investigation Collaborative (PWS-CLIC), a network of PWS clinical experts formally established in 2021 and supported by FPWR, held their annual meeting in Atlanta, Georgia, in conjunction with the FPWR Research Symposium and Family Conference, on September 27th, 2024.

United in Hope: 2025 Global Prader-Willi Syndrome Conference

October 16, 2024

We are excited to announce that the 2025 "United in Hope" conference will be held in collaboration with the International Prader-Willi Syndrome Organisation (IPWSO), the Prader-Willi Syndrome Association | USA (PWSA | USA), and the Foundation for Prader-Willi Research (FPWR).

FDA Determines No Need For Advisory Committee Meeting At This Time

October 8, 2024

Soleno Therapeutics announced today that the U.S. Food and Drug Administration (FDA) Review Division has determined that there does not appear to be a need for an advisory committee meeting at this time for the New Drug Application (NDA) for

Select Sessions from our 2024 Research Symposium and Family Conference Now Available

October 2, 2024

We're excited to announce that select sessions from our recent PWS Research Symposium and Family Conference are now available to watch! This year’s event brought together leading experts, researchers, and families from around the world to explore the latest advancements

New Study Highlights the Severe Impact of COVID-19 for Individuals with PWS

September 19, 2024

As the COVID-19 pandemic continues to evolve, researchers are working hard to understand how the virus affects individuals with Prader-Willi syndrome (PWS). A recent study by FPWR Grant Recipient Dr. James Luccarelli and colleagues from the Massachusetts General Hospital/Harvard Medical

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