Experience stories

Share your 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-intensive person 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. 


Deepen your knowledge of 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.

About the website contents

 

All of the information on this WebSite is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know at: 

Send a email: wiki@waihonapedia.org