Foundation for Prader-Willi Blog

FDA Advisory Committee to Review DCCR as Treatment for Hyperphagia in PWS

The FDA has announced its plan to conduct an Advisory Committee Meeting as part of its review of Soleno Therapeutics' DCCR New Drug Application. The FDA convenes Advisory Committees to provide independent expert advice that contributes to the agency'...

September 3, 2024 Read More

Topics: Research

Exploring Type I and II Deletions in Prader-Willi: Cell-Level Insights

Most cases of Prader-Willi syndrome (PWS) are caused by a deletion on the paternally inherited copy of chromosome 15, but not all deletions are the same. Researchers recognize two main types—Type 1 (T1) and Type 2 (T2)—which differ in the size of the...

August 20, 2024 Read More

Topics: Genetics and Imprinting, Research

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, Clinical Trials

Why We Are HopeFULL for the Future of People with Prader-Willi Syndrome

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...

June 13, 2024 Read More

Topics: Research

FPWR Genome Study Insights: Caregiver Views on Pharmacogenomics for PWS

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...

May 27, 2024 Read More

Topics: Resource Development, Research, Parents

FPWR Announces 1st Round of 2024 Grants

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 ...

May 15, 2024 Read More

Topics: Research, Schaaf-Yang Syndrome

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

Clinical Trials Panel [2023 Conference Video]

In this one hour and 8-minute video, Dr. Theresa Strong, FPWR’s Director of Research Programs, explores PWS clinical trials that are already underway or enrolling participants.

April 23, 2024 Read More

Topics: Research, Clinical Trials, Family Conference

PWS Registry Data: Skin Picking in PWS [INFOGRAPHIC]

Individuals with PWS often exhibit a variety of self-injurious behaviors, and one of the most common of these is skin picking. Individuals typically start with a fixation on some imperfection in the skin. This can be a rough or dry patch of skin, an ...

April 9, 2024 Read More

Topics: Research

Foundation for Prader-Willi Blog | Research (6)

Categories

FDA Advisory Committee to Review DCCR as Treatment for Hyperphagia in PWS

Exploring Type I and II Deletions in Prader-Willi: Cell-Level Insights

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

Why We Are HopeFULL for the Future of People with Prader-Willi Syndrome

FPWR Genome Study Insights: Caregiver Views on Pharmacogenomics for PWS

FPWR Announces 1st Round of 2024 Grants

Advancing Prader-Willi Syndrome Care With the PWS Profile

Clinical Trials Panel [2023 Conference Video]

PWS Registry Data: Skin Picking in PWS [INFOGRAPHIC]

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