Federatie WaihonaPedia

Our goal is to increase the well-being and happiness of people with rare diseases and their loved ones. We do this by supporting communities so that essential knowledge from families and experts can be shared with each other through our online platform and by organising knowledge workshops.


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

Secretariaat Stichting WaihonaPedia
Choorstraat 53
5211 KZ 's-Hertogenbosch

Broed 's-Hertogenbosch,
Burgemeester Loeffplein 70b/c
5211 RX 's-Hertogenbosch

Read more about our community...

Our Volunteers and Supporters...


Antoon Kuijpers


Els van Overbruggen-Hartman


Andrea Morales


Gerritjan Koekkoek


Willem Stolwijk

Get connected

Follow these steps...

Otherwise contact your national centre of expertise

Our vision

Collaboration helps....

Collaborating with other family communities offers shared knowledge, advocacy strength, pooled resources, and accelerated research progress. Together, these collaborations empower individuals, amplify voices, advance treatments, and raise awareness, ultimately driving positive change.

See our current partners below


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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Nederlandse Vereniging Williams Beuren Syndroom

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Vereniging Angelman Syndroom Nederland

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Stichting Rubinstein-Taybi

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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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