Pitt-Hopkins syndrome


Ask our experts

We collect questions often asked by people around Pitt-Hopkins syndrome, so you can search if your question is already asked. Each new question that is asked within our community is answered by a forum of experts with different expertises. We add links to helpful information, rewrite them to be understandable and share them 1. In this way we want to inform families, make them feel empowered and give them just that little bit of extra support.

Because if there is something typical for families with a care-intensive2 child like Pitt-Hopkins syndrome, is that you will have a lot of questions. And we all want that you can remain upright, by showing that no question is too complicated or not worth asking. 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. 


Ask a Question
Pitt-Hopkins syndrome

Participate   Tell me more...

More detailed sections on Pitt-Hopkins syndrome

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

  1. ^
    • when the person that asked the question has given permission to share this. 
    • Sometimes, on request of the person that asked the question, we will change the names to anonynymous information to shield the privacy of your community member
  2. ^
    • care-intensive: a lot of questions (and answers to these) will be 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 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:

team WaihonaPedia

Participants and Partners:

umc.png

fondsvg.png

kp.png

ms.png

wb.png

ph.png

rt.png

ts.png

am.png

cdls.png

logoWit.png

logoZeldsamen.svg

copyrights