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Foundation for Prader-Willi Blog | Advocacy

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RareCAP: A New Resource Bringing Expert PWS Care Within Reach

Finding a doctor who understands Prader-Willi syndrome (PWS) isn’t always easy—especially in urgent or emergency situations. That’s why we’re excited to introduce a new tool that puts trusted PWS medical guidance into the hands of those who need it m...
May 19, 2025 Read More

Topics: Resource Development, Parents, Advocacy

The Power of Representation in the PWS Community

When Karine’s son, Olivier, was diagnosed with Prader-Willi Syndrome (PWS), she searched for something beyond medical information—she was looking for people who looked like him. She wanted to see a future for her child, one that felt familiar and hop...
March 4, 2025 Read More

Topics: Parents, Partners, PWS People, Advocacy

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

From Holidays to Baby Showers: Your Custom Card Can Make A Difference

Did you know that by simply sending a card, you have the power to make a difference in the lives of those affected by Prader-Willi syndrome? It's true! Every time you send a card, you not only spread awareness about this rare genetic syndrome but als...
November 7, 2023 Read More

Topics: Advocacy

Generous Donor Ignites the $25,000 Challenge

Recently, a matching donor came forward, igniting the $25,000 Challenge. Today, we want to introduce you to our generous matcher: Maria.
August 3, 2023 Read More

Topics: Advocacy

FPWR 2023 Family Conference - New Parents Welcome!

You won’t want to miss these speakers at the 2023 FPWR Family Conference this October in Denver, CO.
June 6, 2023 Read More

Topics: Parents, Adults, Children 0-3, Advocacy

Harmony Biosciences releases a statement to the PWS Community

A recent report from Scorpion Capital, a financial research group that specializes in 'activist short selling', makes several allegations about potential side effects of the drug Wakix (pitolisant), which is currently being evaluated in a clinical tr...
March 29, 2023 Read More

Topics: Advocacy

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

FPWR
440 N Barranca Ave #3620
Covina, CA 91723

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