Foundation for Prader-Willi Blog

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 New PWS Profile Tool

PWS impacts many aspects of our children’s lives. The hallmark struggle for those affected by PWS is hyperphagia, or excessive appetite. But beyond hyperphagia, individuals with PWS are susceptible to other behavioral and emotional problems that affe...

May 13, 2024 Read More

Topics: News, Resource Development, Research, PWS People

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

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

Sleep and Schaaf-Yang Syndrome [2023 CONFERENCE VIDEO]

In this 74‑minute video, Dr. Joanna Wrede, a pediatric sleep neurologist at Seattle Children’s Hospital, explains how sleep disorders are identified and treated in children with Schaaf-Yang syndrome.

April 4, 2024 Read More

Topics: Research

Behavior and Mental Health - Age 5 and Up [2023 CONFERENCE VIDEO]

In this 30‑minute video, Patrice Carroll, Elizabeth Roof, and Dr. Deepan Singh discuss strategies for addressing behavioral and mental health challenges in children aged 5 and up with Prader-Willi syndrome.

March 14, 2024 Read More

Topics: Research

Learning from Every Patient: The PWS-CLIC Starts a Shared Database

The PWS-Clinical Investigation Collaborative (PWS-CLIC) is a network of PWS clinical experts, formally established in 2021. The work of the PWS-CLIC is supported by FPWR. This network has expanded over the past two years and now includes 25 clinical ...

March 5, 2024 Read More

Topics: Research, PWS People

What Is the PWS CLIC [2023 Conference Video]

In this 10‑minute video, Caroline Vrana-Diaz, FPWR Research Project Coordinator, explains how the PWS CLIC is helping to improve standards of care for people with Prader-Willi syndrome.

March 1, 2024 Read More

Topics: Clinical Issues, Research

Foundation for Prader-Willi Blog | Research (4)

Categories

FPWR Genome Study Insights: Caregiver Views on Pharmacogenomics for PWS

FPWR Announces 1st Round of 2024 Grants

Advancing Prader-Willi Syndrome Care With the New PWS Profile Tool

Clinical Trials Panel [2023 Conference Video]

PWS Registry Data: Skin Picking in PWS [INFOGRAPHIC]

Sleep and Schaaf-Yang Syndrome [2023 CONFERENCE VIDEO]

Behavior and Mental Health - Age 5 and Up [2023 CONFERENCE VIDEO]

Learning from Every Patient: The PWS-CLIC Starts a Shared Database

What Is the PWS CLIC [2023 Conference Video]

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