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Research Blog

A Call To Action: Why PWS Clinical Trials Need to Be Full

Treatments for Prader-Willi syndrome are urgently needed. Today, we are closer than ever to the treatments for which we have been waiting, but we need all hands on deck to ensure our efforts can take us to the finish line. Here's why.

PWS Receives Specific Disease Code to Track Medical Care and Outcomes

The National Center for Health Statistics has designated a specific ICD-10 code for Prader-Willi syndrome (PWS). Previously PWS was included as one of number of genetic disorders ICD-10-CM code Q87.1, which contains a large group of genetic disorders associated with short stature. However, the genetic causes, medical complications, and treatment of these disorders are very different.

Debunking the Myths of Clinical Trials

Nearly 500 people with PWS are needed this year to fill PWS specific clinical trials. These trials are incredibly important to the PWS community and are necessary in order to bring treatments for some of the most challenging aspects of PWS. Here, we debunk a few of the most common clinical trial myths. 

 

Pitolisant approved for treatment of excessive daytime sleepiness in adult patients with narcolepsy

Harmony Biosciences has announced that the U.S. Food and Drug Administration has approved WAKIX┬« (pitolisant) for the treatment of excessive daytime sleepiness (EDS) in adult patients with narcolepsy.  

Managing Challenging PWS Behavior at Home and School: 2019 Conference Highlight

Need help with behavior management? Struggling with behavior at school?

Our Challenges Are Opportunities To Be Better People, Says PWS Mom

A special contribution by guest blogger Laura Achlabach

Laura shared her story via our Stories of Hope questionnaire.

Psychologist Lauren Roth on Behavior, Mental Health and PWS [PODCAST]

 

'My Life Was Enriched By Having a Sibling With PWS'

A special contribution by guest blogger Deb Cooper

Deb shared her story via our Stories of Hope questionnaire.

PWS Clinical Trials Alert: July 2019

Several NEW PWS trial opportunities are now available. FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits while others can be completed remotely. Some trials are testing new drugs while others are intervention (non-drug) or natural history studies, like the PWS Weight Study described below.

Anyone Anywhere Can Raise Funds to Speed Research for Prader-Willi Syndrome

Community members from coast to coast are finding easy ways to make supporting PWS research FUN! A 1-mile kids race, a friendly kickball tournament, an uncle's bike ride across America, and an individual Ironman are just four examples of our community rising together to raise critical funds for PWS research while doing what they love!