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Research (13)

PWS Registry Data: GI Issues in Prader-Willi Syndrome [INFOGRAPHIC]

June 18, 2021

Individuals with PWS suffer from a variety of digestive and gastrointestinal issues (GI), some of which can lead to surgery. Here, we focus on data from the Global PWS Registry to provide information on the prevalence of gastroparesis (delayed stomach

Next Steps In PWS Advocacy

June 11, 2021

For more than a decade, FPWR has partnered with families and other PWS groups (PWSA|USA, IPWSO) to advocate for PWS treatments. We've worked diligently to build resources that address the FDA’s call for patient experience data, demonstrating high disease burden

Hyperphagia Leads to Increased Caregiver Burden Across the Lifespan

May 21, 2021

Hyperphagia is a life-long concern for individuals with PWS and their caregivers. In a recently published study conducted by FPWR and the PWS Clinical Trials Consortium, we found caregiver burden increases as the person with PWS gets older, and as

Optimal Nutrition for People With PWS [2020 CONFERENCE VIDEO]

May 17, 2021

In this 60‑minute workshop, Melanie Silverman explains optimal nutrition for children and adults with Prader‑Willi Syndrome. She includes online resources and gives tips on how to handle feeding times and varying diets. The session includes Q&A from participants in the

FPWR Launches First of Kind PWS Genome Project

May 14, 2021

FPWR is pleased to announce the launch of an exciting new research study: the PWS Genome Project. This study will provide new insight into how variations across the entire genome influence the range and severity of symptoms in people with

What Does Effective PWS Treatment Advocacy Look Like?

May 7, 2021

Last fall, the PWS community was excited to see two drugs complete Phase III clinical trials: both DCCR and Carbetocin hold promise in addressing hyperphagia, a top priority for PWS families. Both studies had positive results, but neither reached statistical

Orthopedic Challenges in Prader‑Willi Syndrome [2020 CONFERENCE VIDEO]

May 3, 2021

In this 60‑minute workshop, Dr. Van Bosse discusses the diagnosis and treatment of orthopedic challenges in PWS and how in his practice of pediatric orthopedic surgery since 1994, he has helped hundreds of patients with PWS. The session includes Q&A

FAQ: DCCR, Drug Development, and Advocacy

April 30, 2021

Since Soleno's announcement that the FDA will require an additional clinical trial before accepting a New Drug Application for DCCR, FPWR has received a number of questions regarding DCCR, where DCCR is in the approval process, what advocacy looks like,

Keeping Your Loved One With PWS Safe On The Internet

April 16, 2021

Let's be frank: our loved ones, like all of us, are spending more and more time online. Some PWS features—such as obsessional thinking, compulsive behavior, and poor impulse control—make keeping an eye on your loved one with PWS while online

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