Pitt Hopkins UK

Pitt Hopkins UK is a registered charity that aims to raise awareness of Pitt-Hopkins Syndrome (PTHS) an ultra rare  neuro-developmental  condition, particularly among the health professionals, to support and advocate for families while delivering the latest information.

Pitt Hopkins UK also hopes to be able to fund some research  for example into the breathing anomalies  that affect many children and adults with this syndrome. This organisation is run by 6 trustees, all volunteers, who are parents of a child or children with PTHS. They represent about 70 families in the UK and Ireland and want to find the many other families  that we know are diagnosed. It is thought there are about 250 to 300 diagnosed in the UK.

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