Pitt Hopkins UK

Pitt Hopkins UK

At a glance


  • Health and well being / research and care
  • Learning disabilities / difficulties

Other details

Geographical remit: 
National - Britain


Pitt Hopkins UK helps families with a child with Pitt Hopkins and Pitt Hopkins Like Syndromes in the UK and Eire.

  • We help with an online support group,
  • by organising family and information days and
  • phone calls and meetings where possible.
  • We are all trying to learn more about Pitt Hopkins Syndrome together.Pitt Hopkins Syndrome was first described by Drs Pitt and Hopkins in 1978 but a blood test to diagnose it was only developed in 2007 and before that only 7 to 8 were clinically diagnosed.As a result there is still much to learn about the syndrome.
  • Many doctors have never heard of PTHS let alone met a child with the diagnosis so together we are trying to find answers to many of our questions.
  • We are trying to raise awareness of PTHS so more families can be diagnosed and be able to be helped.
  • We raise money to help with research into PTHS and we hope to find solutions to some of the symptoms such as the hyperventilation and apnoea with which many of the children have to cope.


We have a Online google support group where we can share and learn from one another.

We have organised days where people can get together and learn more about PTHS from the speaker and from shared experiences . 

We try to raise awareness amongst the general public but particularly amongst health professionals. and try to do this with a UK website and Facebook page for the UK and also for Raising Awareness.We have helped with an online questionnaire to learn more about Pitt Hopkins Syndrome.

 We raise funds to help with research into Pitt Hopkins Syndrome and to enable us to meet together. 

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