Foundation for Prader-Willi Blog

FPWR Joins the Rare Disease Diversity Coalition

Improving diversity, equity, inclusion, and accessibility (DEIA) in PWS clinical research is a priority for FPWR, and we are working to partner with experts and other patient groups working in this area. FPWR has recently joined the Rare Disease Dive...

July 2, 2024 Read More

Topics: News

Soleno Therapeutics Submits New Drug Application for DCCR

We are excited to share the news that Soleno Therapeutics has submitted its New Drug Application (NDA) for DCCR to the FDA. This application is seeking approval for DCCR to treat hyperphagia in people with PWS ages 4 and older. The FDA has a 60-day f...

June 28, 2024 Read More

Topics: News

Empowering Diversity and Inclusion for the PWS Community

In a significant step towards fostering equity and inclusion within our Prader-Willi syndrome (PWS) community, we are pleased to announce a collaborative initiative aimed at improving the standard of care and support for marginalized individuals livi...

June 20, 2024 Read More

Topics: News

Recent Advances in Drug Development Bring Treatments Within Reach for PWS

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...

May 21, 2024 Read More

Topics: News

Advancing Prader-Willi Syndrome Care With the PWS Profile

Prader-Willi syndrome (PWS) impacts many parts of our children’s lives. While the hallmark challenge is hyperphagia—an uncontrollable, excessive appetite—there’s much more beneath the surface. Children and adults with PWS often face behavioral and em...

May 13, 2024 Read More

Topics: News, Resource Development, Research

Top 10 Reasons to Attend the 2024 FPWR Family Conference

Join us September 27–28 for our annual gathering of movers, shakers, thinkers, and doers at this year’s FPWR Family Conference! It's a unique opportunity to connect, learn, and grow alongside like-minded individuals who are dedicated to making a diff...

March 20, 2024 Read More

Topics: News, Family Conference

Analysis of Hyperphagia Questionnaire for Clinical Trials (HQ-CT) Scores

The Hyperphagia Questionnaire for Clinical Trials (HQ-CT) is typically completed by caregivers for individuals with PWS who are enrolled in clinical trials. The questionnaire is designed to evaluate changes inhyperphagia during the course of the tria...

January 10, 2024 Read More

Topics: News, Research, Parents

10 Highlighted Research Accomplishments from 2023

2023 marks yet another record-breaking year in our pursuit of treatments for Prader-Willi (PWS) and Schaaf-Yang (SYS) syndromes. In this blog, we shine a spotlight on 10 research accomplishments from 2023, each contributing to a deeper understanding ...

January 10, 2024 Read More

Topics: News, Research

Improving the PWS Clinical Trial Experience for Families and Clinical Study Site Staff

It has been an exciting time for PWS research and clinical trials. The field has been working hard to find effective treatments for the symptoms of PWS to help our children lead more independent and fulfilling lives. In the last several years, there ...

November 29, 2023 Read More

Topics: News, Clinical Issues, Resource Development

Foundation for Prader-Willi Blog | News (5)

Categories

FPWR Joins the Rare Disease Diversity Coalition

Soleno Therapeutics Submits New Drug Application for DCCR

Empowering Diversity and Inclusion for the PWS Community

Recent Advances in Drug Development Bring Treatments Within Reach for PWS

Advancing Prader-Willi Syndrome Care With the PWS Profile

Top 10 Reasons to Attend the 2024 FPWR Family Conference

Analysis of Hyperphagia Questionnaire for Clinical Trials (HQ-CT) Scores

10 Highlighted Research Accomplishments from 2023

Improving the PWS Clinical Trial Experience for Families and Clinical Study Site Staff

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