welcome

at the Stichting WaihonaPedia

Goal of Stichting WaihonaPedia

Our goal

Imagine a world in which every single human being can freely share in the sum of all knowledge about a rare condition.

WaihonaPedia is an Internet encyclopedia to which a large number of authors around the world contribute. They all do so on a voluntary basis. Many of these writers, usually members of a national group around a rare condition1, occasionally correct a spelling error. But there are also many who feel that without their help, too little is known about how to organize a nice life with a family member or acquaintance with such a self-sustaining condition. For them it becomes a passion, an essential contribution. They adapt the contents of the encyclopedia. All these volunteers together are called the “volunteer community” or even “citizen scientists.

WaihonaPedia is written by a diverse group of volunteers with all kinds of backgrounds in daily life and various reasons to engage with this wonderful audience. Because each WaihonaPediaan has a “user page” where he or she can tell something about themselves, we know a little more about their profession, hobbies and what drives them. 

For example, there are (retired) passionate academics around, parents, family members, teachers, caregivers and supporters. Often they are people who are involved in one way or another with such a rare condition, but they don't have to be at all. The main motivations are to share knowledge, to gain knowledge, out of idealism because it is so necessary and just “because it is fun.

  1. ^ many of them are called a syndrome, meaning they are complex, all of the conditions are caused by a genetic problem en often come with neurological development issues and cause a lot of distress within the family

  

Team

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Voorzitter

Prof. dr. Rob Heethaar

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Secretaris

Els van Overbruggen-Hartman

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Penningmeester

Willem Stolwijk

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Bestuurslid

Antoon Kuijpers

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Managing Director

Gerritjan Koekkoek

What we do

Support families in organizing lifelong care.
1Quality of Advice: The organization offers valuable, well-researched advice that can noticeably improve quality of life.
2Commitment and Empathy: You can count on an involved and empathetic approach, where the organization is attentive to your personal situation.
3Relevance and Expertise: The advice is based on in-depth knowledge and fits well with the specific needs of your family and care situation.
4Reachability and Accessibility: The organization is easily accessible and offers accessible services through various channels.
5Innovation and Adaptability: The organization adapts flexibly to changing circumstances and remains innovative in its approaches.
Practical

Practical

WaihonaPedia is legally owned by the WaihonaPedia Foundation, a Dutch non-profit foundation . The organization is based in 's-Hertogenbosch in the Netherlands, but has a few partners internationally who deal mainly with the software, servers, administration and legal issues to make the WaihonaPedia platform possible.It makes the platform available free of charge to participants anywhere in the world.






Costs

Costs

The WaihonaPedia Foundation is funded by the national groups around the disorders. These contribute the money needed to keep the platform available. Using this money, the foundation conducts activities to keep the platform working and resolve technical failures.The software written for WaihonaPedia is open source software that is also used to implement innovations deemed important by users. The services for this are typically Development, Construction, Testing, Architecture and Consulting. Revenue for these activities is obtained through projects often funded by the government (project grant) and by national groups around the disorders
Contact

Contact

Stichting WaihonaPedia

Stichting WaihonaPedia

Jheronimus Academy of Data Science
St. Janssingel 92
5211 DA ‘s-Hertogenbosch
 

 

NETHERLANDS
by phone:


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