Foundation for Prader-Willi Blog

Vanderbilt Clinic Founder Reflects on Filling the Gaps In PWS Care

This guest blog was contributed by Dr. Jessica Duis, Pediatric Geneticist at Vanderbilt University Medical Center and author of A Multidisciplinary Approach to the Clinical Management of Prader–Willi Syndrome. One of the most common questions I hear ...

February 25, 2019 Read More

Topics: Research

FPWR Announces Second Round of 2018 Grant Awards for PWS Research [VIDEO]

The Foundation for Prader-Willi Research (FPWR) announces a the funding of 11 Research Awards totaling more than $1,000,000. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and rel...

December 19, 2018 Read More

Topics: Research

Does Your Loved One With PWS Have Hyperphagia?

This guest blog was contributed by researchers Elisabeth Dykens and Elizabeth Roof of Vanderbilt University Does your loved one with PWS have hyperphagia? The answer isn't as simple as yes or no. Even if your loved one does not display the hallmark h...

December 5, 2018 Read More

Topics: Research

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

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

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

Results of Phase 2 Study Evaluating Carbetocin for PWS Published

The results of a Phase 2 clinical trial evaluating carbetocin in PWS have just been published in the journal JCI Insight. The findings of the paper, "Intranasal Carbetocin Reduces Hyperphagia In Individuals With Prader-Willi Syndrome," support the ad...

June 22, 2018 Read More

Topics: Research

How Patients Can Partner to Speed Treatments for PWS [WEBINAR]

On May 15, PWSA-USA and FPWR jointly presented the webinar How Patients Can Partner to Speed Treatments for PWS. The webinar provided important information about PWS clinical trials including: what to expect when participating in a trial, what questi...

May 22, 2018 Read More

Topics: Research

Dr. Elisabeth Dykens Receives Rare Impact Award From National Organization for Rare Disorders

FPWR congratulates Dr. Elisabeth Dykens, who was awarded last night with a Rare Impact Award by the National Organization for Rare Disorders. Dr. Dykens may best be known in the Prader-Willi syndrome (PWS) community for developing the Dykens Hyperpha...

May 17, 2018 Read More

Topics: Research

Foundation for Prader-Willi Blog | Research (21)

Categories

Vanderbilt Clinic Founder Reflects on Filling the Gaps In PWS Care

FPWR Announces Second Round of 2018 Grant Awards for PWS Research [VIDEO]

Does Your Loved One With PWS Have Hyperphagia?

2018 PWS Research Symposium: Abstracts Now Available

Progress on 10 Recommendations from PWS Mental Health Research Workshop

NEW Tool to Help Measure Anxiety and Distress in PWS

Results of Phase 2 Study Evaluating Carbetocin for PWS Published

How Patients Can Partner to Speed Treatments for PWS [WEBINAR]

Dr. Elisabeth Dykens Receives Rare Impact Award From National Organization for Rare Disorders

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