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FPWR Blog

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

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 situati...
February 4, 2025 Read More

Topics: Resource Development, Parents

Help Drive Progress: Become an Advocate Reviewer for PWS Research

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 FP...
January 28, 2025 Read More

Topics: Parents, Advocacy

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

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—...
December 4, 2024 Read More

Topics: Research

Recap of the PWS-CLIC Meeting in Atlanta

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 C...
November 26, 2024 Read More

Topics: Research

United in Hope: 2025 Global Prader-Willi Syndrome Conference

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 Pra...
October 16, 2024 Read More

FDA Determines No Need For Advisory Committee Meeting At This Time

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 DCCR (di...
October 8, 2024 Read More

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

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...
October 2, 2024 Read More

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

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 Massachus...
September 19, 2024 Read More

Topics: Research

FDA Accepts DCCR Filing and Grants Priority Review

Soleno Therapeutics announced today that the U.S. Food and Drug Administration (FDA) has accepted their New Drug Application (NDA) and granted priority review for DCCR (Diazoxide Choline Controlled-Release), a treatment for patients with Prader-Willi...
August 27, 2024 Read More

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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Our Mission

The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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440 N Barranca Ave #3620
Covina, CA 91723

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