Pitt-Hopkins syndrome


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-intensive1 child 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. 

More detailed sections on Pitt-Hopkins syndrome

We organize our stories about Pitt-Hopkins syndrome in topics. You can browse our topics below. Below each topic you might find more detailed topics with stories that might be of interest to you.

  1. ^ care-intensive: a lot of care is needed. A care-intensive child is a child with a physical, mental or behavioural disability (or a combination thereof) that requires extra care.
    care-intensive: a word that we came up with, with which we focus on the experience of the care with Pitt-Hopkins syndrome rather than the diagnostics.

About the website contents

All of the information contained within this site is for education purposes only. Please contact your doctor to get specific medical advice, diagnoses, and treatment. 

Use of this site is strictly at your own risk. 

WaihonaPedia is a platform where parents and experts share experiences and develop knowledge together. So it is not a knowledge base that is finished: WaihonaPedia is work in progress. 

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