We raise awareness of Pitt-Hopkins syndrome with doctors, support families of those with PTHS, help fund research and deliver up-to-date information.
How your support can make a difference
Most doctors have not heard of Pitt-Hopkins syndrome so cannot recognise or diagnose it
Up to 55% with PTHS say only single words before age 10, many none in their lifetime
Most cases of Pitt-Hopkins syndrome are de novo. It’s not been seen in the family before