Hyaline Fibromatosis Syndrome is an extremely rare genetic condition affecting fewer than 150 known individuals worldwide. It causes painful skin growths, joint stiffness, and serious health complications. Despite its severity, there is currently no cure — and very limited research funding.
Families like ours are fighting every day — and together, we can change that story.
As of now, we do not have clinical trials or a cure that has been discovered to help our children. That is why we need to come together and share our stories to help one another. We have a small but mighty community that I believe can help find a solution to this very sad condition. Dr. Joseph Shieh of UCSF is very passionate about helping solve this puzzle. He is uniting with us to bring hope and togetherness for a brighter future.
If you have a child or loved one with this condition and would like to speak to a medical professional who is familiar with the condition I highly recommend you contact Dr. Shieh
Dr.Joseph Shieh
(415)476-2757
joseph.shieh2@ucsf.edu
