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Are you a new parent to the Individualized Education Plan (IEP) process and seeking to understand the journey ahead? Or a veteran to the IEP process and seeking tips and strategies to ease the experience?
Our team recently presented a summary of our 2018 programs and 2019 plans to the FPWR board of directors and, in reflection, 2018 was a great year of progress in PWS research!
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Attending a conference means being around people who get it—they understand the journey you have been on with your child, personally, and with the world. It’s like seeing your family when you attend the FPWR Family Conference. Everyone, whether a new...
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The Foundation for Prader-Willi Research is pleased to announce the addition of ConSynance Therapeutics and Harmony Biosciences to the PWS Clinical Trials Consortium.
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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...
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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...
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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...
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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...
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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...
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