Share your stories
Stories are written for and by people around Pitt-Hopkins syndrome, so we know what we are talking about. We listen to all the stories, write them down and share them. And translate relevant news about Pitt-Hopkins syndrome into readable articles. In this way we want to connect families, let them laugh and relax or give them just that little bit of support.
Because if there is something important for families with a care-intensive person like Pitt-Hopkins syndrome, it is that the family remain upright. And that is what we, as community around Pitt-Hopkins syndrome, are committed to doing with heart and soul.
Pitt-Hopkins syndrome (PTHS) is a rare genetic disorder. Many people have never heard of it before. It poses different physical, cognitive and medical challenges.