Welcome to We Are FSS, a hub for those with Freeman-Sheldon Syndrome, and their families.

Our goal is to be a starting point for those searching for unfound answers and connections — current information about FSS, and supportive human connection with the global FSS community.

This site is not a new authority, and none of us are doctors. We have experienced a lot, asked a lot of questions, and learned a few things along the way. We are FSS.