Stichting WaihonaPedia

We believe that the right knowledge about rare diseases increases the happiness and well-being of people with these diseases, their parents, their sisters and brothers, their families and their friends.
We do this by sharing essential and useful knowledge of parents and experts.
We use an online platform to make the right knowledge available. Knowledge workshops can also be organised on this platform.


We will contribute to a better quality of life for families around a disease by helping communities to offer precisely that information to a family that will allow them to make the right decisions, to feel empowered with solutions and to get energy from support(ing) others with the same disease.

Calendar of our events   

Our approach

We offer a platform to which communities around a rare disease can connect. Through our platform communities will help each other by sharing best practises. Also many of the complications in the disease are present in other diseases as well. Through our smart platform you can easily use the information provided by another disease and give it the details of your own disease.We are a non-profilt organization and will always protect the interests of our communities. We do not sell or provide informations to any other organization as the ever growing list of connected communities.
Supports multiple communities

Contact information

Read more about our community...

Our Volunteers and Supporters...


Gerritjan Koekkoek

Get connected

Follow these steps...
Otherwise contact your national centre of expertise
Our vision

Our communities


Marshall Smith Syndrome Research Foundation

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Vereniging Cornelia de Lange syndroom

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stichting Pitt Hopkins Syndroom

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Vereniging Angelman Syndroom Nederland

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Stichting Rubinstein-Taybi Syndroom

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Stichting Tubereuze Sclerosis Nederland


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: 

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