“For me, and for many other desmoid patients, the biggest frustration has always been the lack of information in the medical community about how to treat the disease…I am so excited for this registry…The more of us that participate, the more valid and robust the data! It also helps tremendously to know that despite the fact that we suffer from a rare disease, we are not alone. I can see the [anonymous] results from other participants and see how our experiences compare. It also comforts me to know that by sharing my experience, I may be able to help other desmoid patients that may have never met anyone with the disease.”