Welcome - Pitt Hopkins syndrome (PTHS) Community

What is Pitt Hopkins syndrome (PTHS) ?

Pitt Hopkins Syndrome is a genetic disorder characterised by learning disabilities and developmental delay from moderate to severe, unusual breathing episodes,(apnoea and hyperventilation), epilepsy and distinct facial features. Some people with PTHS do not have seizures or any breathing problems. Many people with PTHS do not talk but most will learn to walk eventually.
Pitt Hopkins syndrome (PTHS) Resources

Latest Member Stories

Maarten

by RareConnect team published 17 days ago No comment At six months he still did not turn like the other children and still clenched his fists. After approximately 6-7 months it was more and more clear...

PHOEBE

by RareConnect team published 22 days ago No comment When Phoebe was around 6 months old, her nursery teacher questioned her development and after a family holiday it was obvious to us that Phoebe was...