The Inspiration Behind TREND Community
The concept for TREND Community came about after our child was born with a rare genetic disorder, Prader-Willi Syndrome (PWS). When we received the diagnosis, we were presented with outdated statistics and not made aware of treatments considered to be the standard of care by leading PWS specialists. Our doctors did not have access to the most current information. We spent months conducting our own research and eventually connected with a community of parents whose children were happy and thriving. We learned about treatments, diets and therapies that could greatly improve quality of life and give our child hope for an independent future. Given our experience, we wanted to create a platform—TREND Community—that connects scientists, doctors, therapists, research organizations, patients, and caregivers in real time and enables them to directly organize experiments and crowd-source the collection of real-world data.