Foundation for Prader-Willi Blog (42)

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

Soleno Therapeutics Receives Fast Track Designation from FDA for DCCR for Treatment of Prader-Willi Syndrome

Soleno Therapeutics has received an FDA Fast Track Designation for diazoxide choline controlled-release (DCCR) for the treatment of PWS. Soleno is currently conducting a Phase III clinical trial of DCCR for the treatment of PWS. FPWR provided partial...

July 31, 2018 Read More

NEW Tool to Help Measure Anxiety and Distress in PWS

This guest blog was contributed by Sara Cotter, CEO, Levo Therapeutics. When developing new medicines to treat PWS, companies need to demonstrate meaningful improvements in PWS symptoms. For growth hormone, this was relatively straightforward because...

July 20, 2018 Read More

Topics: Research

PWS Registry Data: 88% Have Received Speech Therapy [INFOGRAPHIC]

Speech requires a complex combination of cognitive processing to quickly find and combine the right words, paired with the physical process of producing sounds. Since PWS impacts a variety of pathways that contribute to speech and sound development, ...

July 18, 2018 Read More

FPWR and Zafgen Partner for Natural History Study 'PATH for PWS'

FPWR and Zafgen have partnered to execute a four-year study that will advance the understanding of natural history and medical events in people with Prader-Willi syndrome. The PATH for PWS study (Paving the way for Advances in Treatments & Health...

July 12, 2018 Read More

Topics: News

Interactive PWS Clinical Trial Finder Now Available!

In our continued commitment to provide information on PWS clinical trials, FPWR is pleased to share our new Interactive PWS Clinical Trial Finder. The latest addition to our clinical trials information page, this interactive map allows caregivers to ...

July 10, 2018 Read More

Topics: News

FPWR Blog

Categories

PWS Clinical Trial Consortium and FDA Hold Key Meeting This November

Progress on 10 Recommendations from PWS Mental Health Research Workshop

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

Theresa Strong Named to FDA Patient Engagement Collaborative

Soleno Therapeutics Receives Fast Track Designation from FDA for DCCR for Treatment of Prader-Willi Syndrome

NEW Tool to Help Measure Anxiety and Distress in PWS

PWS Registry Data: 88% Have Received Speech Therapy [INFOGRAPHIC]

FPWR and Zafgen Partner for Natural History Study 'PATH for PWS'

Interactive PWS Clinical Trial Finder Now Available!

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