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FPWR Blog

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Hyperphagia Leads to Increased Caregiver Burden Across the Lifespan

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 hy...
May 21, 2021 Read More

Topics: Research

Optimal Nutrition for People With PWS [2020 CONFERENCE VIDEO]

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 f...
May 17, 2021 Read More

Topics: Research

FPWR Launches First of Kind PWS Genome Project

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 Prader-Will...
May 14, 2021 Read More

Topics: Research

What Does Effective PWS Treatment Advocacy Look Like?

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 sta...
May 7, 2021 Read More

Topics: Research

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

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&am...
May 3, 2021 Read More

Topics: Research

FAQ: DCCR, Drug Development, and Advocacy

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 li...
April 30, 2021 Read More

Topics: Research

Keeping Your Loved One With PWS Safe On The Internet

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 even mor...
April 16, 2021 Read More

Topics: Research

An Update Letter From Soleno Therapeutics

Dear members of the PWS community, We at Soleno Therapeutics would like to provide an update on the status of DCCR. As we have worked with the PWS community over the last several years, whether it is with advocacy leaders from PWSA USA and FPWR, or w...
April 14, 2021 Read More

Drug Development, the FDA and the Role of the PWS Community [WEBINAR]

Where are we with respect to new treatments for PWS? What are our next steps and how can the patient community help ensure that treatments for PWS are made available as soon as possible? In this webinar, our panelists discuss:
April 12, 2021 Read More

About FPWR

The Foundation for Prader-Willi Research (federal tax id 31-1763110) is a nonprofit corporation with federal tax exempt status as a public charity under section 501(c)(3).

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The mission of FPWR is to eliminate the challenges of Prader-Willi syndrome through the advancement of research and therapeutic development.

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Foundation for Prader-Willi Research
Phone: 888-322-5487
Email: info@fpwr.org

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