Stichting WaihonaPedia
welcome
at the 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.
- ^ 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
Prof. dr. Rob Heethaar
Els van Overbruggen-Hartman
Willem Stolwijk
Antoon Kuijpers
Gerritjan Koekkoek
What we do
Support families in organizing lifelong care. | |
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1 | Quality of Advice: The organization offers valuable, well-researched advice that can noticeably improve quality of life. |
2 | Commitment and Empathy: You can count on an involved and empathetic approach, where the organization is attentive to your personal situation. |
3 | Relevance and Expertise: The advice is based on in-depth knowledge and fits well with the specific needs of your family and care situation. |
4 | Reachability and Accessibility: The organization is easily accessible and offers accessible services through various channels. |
5 | Innovation and Adaptability: The organization adapts flexibly to changing circumstances and remains innovative in its approaches. |

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
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