Pitt-Hopkins syndrome


Information

Our information is written for and by people around Pitt-Hopkins syndrome, so we know what we are talking about. We search for information, rewrite them to be understandable and share them. And share relevant news about Pitt-Hopkins syndrome by readable articles. In this way we want to inform families, make the feel empowered to educate the cure- and care-people 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 information about Pitt-Hopkins syndrome in topics. You can browse our topics below. Below each topic you might find more detailed topics with information that might be of interest to you.

  1. ^
    • care-intensive: a lot of information is needed. A care-intensive person is somebody with a physical, mental or behavioural disability (or a combination thereof) and being seldom seen as Pitt-Hopkins syndrome must get the special cure or care that most people do not know about,
    • care-intensive: Because of the rare aspect of Pitt-Hopkins syndrome family members are often, (forced to be), the advocate that can help by being better informed as their cure or care providers,
    • 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. 

If you find something that you think needs correction or clarification, please contact us:

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