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FPWR Blog

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World’s Largest Newborn Screening Study for Four Rare Disorders

The Foundation for Prader-Willi Research and the Angelman Syndrome Foundation are funding the world’s largest newborn screening study for four rare genetic disorders: Angelman, Prader-Willi, Fragile X and Dup15q syndromes. The Victorian Medical Resea...
November 16, 2018 Read More

Topics: Research Blog

President Bill Clinton, Timothy Shriver Headline 2018 Live Life Full Gala

On Wednesday, October 10th, the inaugural Live Life Full DC took place at Army Navy Country Club in Arlington, VA. The event raised nearly $300,000 for PWS research and included guest speakers President Bill Clinton, Special Olympic Chairman, Tim Shr...
October 31, 2018 Read More

PATH for PWS Study Highlighted by National Organization for Rare Disorders

In celebrating five years of success with its comprehensive patient registry, the National Organization for Rare Disorders (NORD) has called special attention to FPWR’s PATH for PWS study. The study stems from improvements made to the NORD registry t...
October 25, 2018 Read More

Topics: News

Meet Lisa Matesevac, FPWR's PATH for PWS Study Coordinator

FPWR is happy to announce that Lisa Matesevac has joined our team as our coordinator for the PATH for PWS Study, facilitating families’ involvement in the study. PATH for PWS will help us understand the medical complications that people with PWS expe...
October 24, 2018 Read More

Topics: News

2018 PWS Research Symposium: Abstracts Now Available

More than 150 scientists, clinicians, industry representatives and community members attended FPWR’s 2018 Research Symposium, making it one of the largest collaborative Prader-Willi syndrome (PWS) research meetings held to date. The single day progra...
October 22, 2018 Read More

Topics: Research

PWS Clinical Trial Consortium and FDA Hold Key Meeting This November

The PWS Clinical Trial Consortium has recently been granted the unique chance to have a Critical Path Innovation Meeting with representatives of the FDA. The meeting will take place in November in Silver Spring, Maryland. This is a unique opportunity...
September 25, 2018 Read More

Topics: News

Progress on 10 Recommendations from PWS Mental Health Research Workshop

Mental health and behavioral problems are a major challenge for individuals with Prader-Willi syndrome (PWS), with significant impacts on quality of life and independence for both the person with PWS and their family. In 2015, FPWR conducted a two-da...
September 12, 2018 Read More

Topics: Research

Finally! We have treatments for PWS in clinical trials. How have we gotten here?

We are in an exciting time in PWS research. More clinical trials evaluating new drugs for PWS are taking place this year than in the last 10 years combined! For the first time ever, families will be able to choose from multiple clinical trials enroll...
August 14, 2018 Read More

Topics: News

Theresa Strong Named to FDA Patient Engagement Collaborative

FPWR is thrilled to announce that Theresa Strong, our Director of Research Programs (and mom to Daniel, with PWS) has been selected to serve on the Patient Engagement Collaborative (PEC) by the U.S. Food and Drug Administration and the Clinical Trial...
August 2, 2018 Read More

Topics: News

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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