Research Blog

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
In this 85‑minute video, Dr. Christian Schaaf, medical director and department chair at the Institute of Human Genetics at the University of Heidelberg and visiting professor at the Baylor College of Medicine, explains our understanding of Schaaf-Yang syndrome to date and the direction of current...
Source: FPWR Blog | Published: February 2 2024 - 09:30 AM
A paper has just been published that provides new insight into the use of feeding tubes in babies with PWS, thanks to the participation of ~350 families who completed the “Feeding Tube Survey” in the Global PWS Registry. Drs. Sani Roy, Ann Scheimann, Lusine Ambartsumyan, Samson Cantu, and Jessica...
Source: FPWR Blog | Published: February 2 2024 - 12:45 PM
It is well established in science as well as culture that the smell of food is linked to appetite, but despite the extensive research being conducted to understand the biology underlying the most notable symptom of Prader-Willi Syndrome, hyperphagia, little research has explored the impact of...
Source: FPWR Blog | Published: January 1 2024 - 09:15 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: January 1 2024 - 04:41 PM
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