Foundation for Prader-Willi Blog

FDA Grants Rare Pediatric Disease Designation to CSTI-500

The FDA has granted Rare Pediatric Disease Designation (RPDD) to ConSynance Therapeutics' new investigational drug, CSTI-500 for the treatment of Prader-Willi Syndrome in children and adolescents. This special status is granted to drugs and biologics...

July 26, 2024 Read More

Topics: News

FPWR 2024 Family Conference: Deep Dive Workshops

You won’t want to miss these speakers at the 2024 FPWR Family Conference this September in Atlanta, GA. This year's conference has something for every parent traveling this PWS and SYS journey. Attend interactive workshops designed to provide practic...

July 17, 2024 Read More

Topics: Parents, Adults, Children 0-3, Children 3-6

22 Years of Hope: Kathryn McGhee's Dedication to Finding PWS Treatments

Kathryn McGhee has been an active member of our PWS community for 22 years, participating in numerous letter-writing campaigns and PWS clinical trials and hosting over a dozen fundraisers for FPWR! As a proud mom to Hannah (who recently turned 23), K...

July 10, 2024 Read More

Topics: Stories of Hope, Parents

Announcing the FPWR Olympics!

Just like the elite athletes competing in the Olympic Games, our community is passionate, dedicated, and persistent in their pursuit of victory! As our Olympians aim for gold, we are relentlessly working towards treatments for Prader-Willi and Schaaf...

July 3, 2024 Read More

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

Katie and Adam Larson: A Decade of Dedication to Finding Treatments for PWS

Since first tapping into our community 12 years ago, Katie and Adam Larson have been ready to do whatever it takes to find treatments and a brighter future for their son, Graham. From co-hosting One SMALL Step walks to throwing memorable Live Life FU...

June 25, 2024 Read More

Topics: Stories of Hope, Parents

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

Webinar: What You Can Expect if You Participate in TEMPO, a Phase 3 Trial of Pitolisant

If your loved one with PWS struggles with daytime sleepiness, you may be interested in learning more about TEMPO, a phase 3 study of Pitolisant, now enrolling volunteers with PWS ages 6 to 65 years old. This study will evaluate the efficacy of Pitoli...

June 18, 2024 Read More

Topics: Research

FPWR Blog

Categories

FDA Grants Rare Pediatric Disease Designation to CSTI-500

FPWR 2024 Family Conference: Deep Dive Workshops

22 Years of Hope: Kathryn McGhee's Dedication to Finding PWS Treatments

Announcing the FPWR Olympics!

FPWR Joins the Rare Disease Diversity Coalition

Soleno Therapeutics Submits New Drug Application for DCCR

Katie and Adam Larson: A Decade of Dedication to Finding Treatments for PWS

Empowering Diversity and Inclusion for the PWS Community

Webinar: What You Can Expect if You Participate in TEMPO, a Phase 3 Trial of Pitolisant

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