WaihonaPedia Foundation
The WaihonaPedia Foundation enables parents, relatives and guardians of people with rare diseases to exchange information among themselves and with experts, both nationally and internationally.
The foundation supports communities of rare diseases to
- listen to the parents, relatives and guardians to detect needs for information,
- activate people to ask questions, share experiences or new knowledge from the professionals, provide information,
- organize (digital) workshops supported by the foundations themerooms,
- organize and dissimilate the information to the community participants in understandable, readable and trustworthy way in as many as possible languages to guarantee accesibility to all.
The foundation develops and maintains an online platform that is unique because of its two-way traffic:
- users can not only place or update information in it when it suits them,
- but also extract information from it.
In this way more insight is gained into these disorders, the quality of life is increased and control over one's own life is obtained. Experts can adjust their treatment methods and research according to the information on the platform.
The foundation was founded on 29 March 2019 and builds on the WaihonaPedia project that started in 2016 on a grant from the Dutch Ministry of Health, Welfare and Sport and whose initiators were Gerritjan Koekkoek, Otto Mak and John van Heukelingen.
Board
- Prof.dr. Rob M. Heethaar, Chairman
- Drs. Willem Stolwijk, Treasury
- Mevr. Els W.H.M. van Overbruggen-Hartman, Secretary
- Mr. Gerard Otten, Advisor of the board
All board members and advisers receive no remuneration for their work for the foundation.
Oganization details
Address: Burchtenlaan 97, 5235 GH ’s-Hertogenbosch, the Netherlands
KvK nr.: 745 170 31 RSIN: 859 932 163 Bank: NL96 RABO 0344 4904 32
