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FPWR Blog

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...

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...

Topics: Research

First Study Site Announced: DCCR for PWS Hyperphagia, Phase 3

Soleno has announced the opening of their first clinical trial site for a Phase 3 study of DCCR to measure the drug's efficacy for treating hyperphagia in PWS. That site is Seattle Children’s Hospital.

Topics: Research

Phase 2 Study on Oxytocin for PWS Now Recruiting

A Phase 2 Study of intranasal oxytocin (IN-OXT) is now recruiting patients for an 8-week double blind study to evaluate the safety and efficacy in pediatric patients with Prader-Willi syndrome. Data from the study will add to the current knowledge th...

Topics: News

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

The Foundation for Prader-Willi Research announces our first round of Research Awards in 2018 totaling $615,000. FPWR is dedicated to supporting research that advances the understanding and treatment of Prader-Willi syndrome (PWS) and to that end, ha...

Topics: Research

PWS Registry Data: Anxiety In PWS [INFOGRAPHIC]

Anxiety is a common challenge for our loved ones with PWS. Recently, we reviewed responses in the Global PWS Registry related to anxiety. According to registry respondents, anxiety is an issue for 48% of individual with PWS ages 10 and up.

Topics: Research

Phase 2 Study Announced: Tesomet for PWS Weight Loss, Hyperphagia

Saniona has announced it will continue its phase 2 study of Tesomet for Prader-Willi syndrome. Saniona is developing Tesomet as a potential treatment for PWS patients to help with weight-loss and reduce hyperphagia (excessive hunger). The study, whic...

Topics: News

Cannabidiol (CBD) Oral Solution for PWS: Phase 2 Clinical Trial Begins

INSYS Therapeutics recently initiated a Phase 2 clinical trial of its cannabidiol (CBD) oral solution for evaluation of safety and efficacy in pediatric patients with Prader-Willi syndrome. The INSYS study will measure the effect of the company’s pro...

Topics: News

Clinical Trials 101: What You Should Know About PWS Clinical Trials

It is an exciting time in PWS research, with multiple new clinical trials on the horizon this spring and through the end of 2018! There is already buzz throughout the community about upcoming studies, providing a wonderful opportunity for an open dia...

Topics: Research