Pitt-Hopkins syndrome


Questionnaires and Scorecards

Nobody with Pitt-Hopkins syndrome is the same! It is important to understand how healthy you are and who you are! Our community provides questionnaires and scorecards that help you to discover how Pitt-Hopkins syndrome has impacted your life, how you develop1
When you discover which aspects of Pitt-Hopkins syndrome impact your life, we will provide links to fitting information to allow you to develop your personal health system. This saves you from digesting information you do not need directly, keeping your head free, to allow you to enjoy life and give you just that little bit of extra support.

Because if there is something typical for families with a care-intensive2 person having Pitt-Hopkins syndrome, is that you will see similarities with others having Pitt-Hopkins syndrome, but that you will also see where you are special. Finding your friend that really matches your lifestyle, has dealt with the same challenges can be improved by finding these people with Pitt-Hopkins syndrome that have approximately provided the same answers to our questionnaires and have similar scorecards.

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. 


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Pitt-Hopkins syndrome

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More detailed sections on Pitt-Hopkins syndrome

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

  1. ^
    • Your answers and information is yours and yours only.
    • we create a privat space for you only!
    • Your data can only be shared by yourself, not even by us! 
    • your information; you can use it whenever you need it! Often people with Pitt-Hopkins syndrome are asked to fill in same like questionnaires again, no more, reuse the information you already have in your privat space.
  2. ^
    • care-intensive: people are special, they are not Pitt-Hopkins syndrome but a unique person
    • care-intensive: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 there is a lot of unknown's,
    • care-intensive: Because of the rare aspect of Pitt-Hopkins syndrome family members are often, (forced to be), the advocate that needs to ask these questions for the better of their family member (or themselves!),
    • 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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