Have you ever wanted to know more about the drug development process and how patients and patient organizations like FPWR can engage with and inform the process? The National Organization for Rare Diseases (NORD) has developed a free educational seri...
Prader-Willi syndrome (PWS) is a complex genetic disorder with a range of challenging symptoms, including hyperphagia (excessive hunger), obesity, and behavioral issues. Despite these challenges, recent advancements in medical research and therapeuti...
Topics: Research
In this 1 hour and 52-minute video, Dr. Anastasia Dimitropoulos of the PRETEND Program, Staci Zimmerman, and Cindy Szapacs discuss social strategies, IEPs, and behavior in the early school years for children with PWS.
Topics: ages: 4-7, Parents, Children 3-6, Children 6-12
The FPWR Genome Study, full title “Whole Genome and RNA Sequencing Analysis in Prader-Willi Syndrome," is an ongoing whole genome sequencing study among 50 individuals with PWS. The goal of the study is to determine if genetic variants outside the PW...
Topics: Resource Development, Research, Parents
Exciting developments are sweeping through the PWS community, spotlighting two potential treatments: Soleno’s DCCR and Aardvark’s ARD-101. Recognition of the PWS community's involvement must be given, as hundreds of volunteers have participated in PW...
Topics: News
We are pleased to announce the recipients of our first round of grants for 2024, totaling more than $1,000,000 in awards, as part of the Foundation for Prader-Willi Research's (FPWR) ongoing commitment to advancing research in Prader-Willi (PWS) and ...
PWS impacts many aspects of our children’s lives. The hallmark struggle for those affected by PWS is hyperphagia, or excessive appetite. But beyond hyperphagia, individuals with PWS are susceptible to other behavioral and emotional problems that affe...
Topics: News, Resource Development, Research, PWS People
May marks Prader-Willi Syndrome (PWS) Awareness Month, shedding light on the complex genetic disorder that brings various challenges to individuals. However, it's important to remember that PWS doesn't define the incredible individuals living with it...
Topics: Stories of Hope
May is PWS Awareness Month. A time to raise awareness and advance research so we may find new treatments for Prader-Willi syndrome (PWS). By coming together this month, we can amplify our impact and propel treatments for PWS forward faster. Since 201...
Topics: News
