Research Blog

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.
Source: FPWR Blog | Published: March 3 2024 - 08:30 AM
FPWR maintains the latest clinical trial information so that you can stay abreast of trial opportunities. Some trials require in-person visits while others can be completed remotely. Some trials are testing new drugs while others are intervention (non-drug) or natural history studies. Details of...
Source: FPWR Blog | Published: March 3 2024 - 01:59 PM
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 sites in the United States and 3 clinical sites...
Source: FPWR Blog | Published: March 3 2024 - 08:45 AM
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.
Source: FPWR Blog | Published: March 3 2024 - 08:30 AM
Schaaf-Yang syndrome (SYS) is an ultra-rare disorder that was first identified in 2013. It is caused by mutations in the MAGEL2 gene, a gene that is also deleted or inactivated in Prader-Willi syndrome (PWS). Because SYS is a relatively newly described disorder, it’s important to understand the...
Source: FPWR Blog | Published: February 2 2024 - 08:30 AM
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