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News (11)

PWS Clinical Trial Consortium and FDA Hold Key Meeting This November

September 25, 2018

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

August 14, 2018

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

Theresa Strong Named to FDA Patient Engagement Collaborative

August 2, 2018

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

Mom Urges Parents to 'Build Our Village' By Joining the PWS Registry

September 13, 2017

I'm thrilled to announce the Global PWS Registry, launched in 2015, now has more than 1,100 participants enrolled! If you haven't enrolled, please visit the registry website today to get started. If you have enrolled, please update your information in

Feeding Challenges and PWS: Q&A With Speech Pathologist Sara Parker

August 8, 2017

Food, hunger, mealtimes, eating — these are all important issues for people with PWS and their families. Sara Parker knows all about feeding challenges and PWS. She's a speech pathologist who specializes in pediatric feeding and has spent more than

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FPWR Receives $30,000 PCORI Award for Real World Data Workshop

September 26, 2016

The Patient-Centered Outcomes Research Institute (PCORI) has awarded FPWR $30,000 to support real world data research readiness in the Prader-Willi syndrome community! This support was awarded to FPWR as a Eugene Washington PCORI Engagement Award. The award will support an

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