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FPWR Blog

Spring Cleaning? Put Your Efforts Towards Supporting PWS Research!

Looking for a quick FUNdraiser this spring? Grab a few friends and de-clutter for donations! Here's how to host a spring cleaning fundraiser for PWS research in 4 easy steps: 1. Ask supporters to donate items to your “garage sale” that they’d ordinar...

Topics: News

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