WaihonaPedia Foundation
The WaihonaPedia Foundation enables parents, relatives and carers of people with rare conditions to exchange information among themselves and with experts, both nationally and internationally.
The foundation supports organisations for rare diseases to:
- determine what information parents, relatives and carers need,
- activate people to ask questions, exchange experiences and knowledge, and provide information,
Organise (online) workshops around certain themes,
Make the information available to all participants in a comprehensible, readable and reliable manner in as many languages as possible.
To this end, the foundation develops and maintains an online platform that is unique for its two-way directions:
- users can not only find information there
- but also post information when it suits them. (Knowledge Development and Knowledge Enhancement)
- Families can get information from Professional Experts.
- Professional Experts can get information from Families
By doing so, more insight is gained into these conditions, the quality of life is increased and control over one's own life is gained. Experts can adjust their treatment methods and research based on the information in the platform.
The foundation was established on 29 March 2019 and builds on the WaihonaPedia project that was started in 2016 on a grant from the Ministry of Health, Welfare and Sport and whose initiators were: Gerritjan Koekkoek, Otto Mak and John van Heukelingen.
ANBI
The request of the board of the WaihonaPedia Foundation to the Tax Authorities to obtain ANBI status was positively assessed in May 2020. On the menu bar at the top of this page you will find annual reports and policy plan.
Board and Organisation
Nos Volontaires et Supporters
Prof. dr. Rob Heethaar
Antoon Kuijpers
Els van Overbruggen-Hartman
Andrea Morales
Gerritjan Koekkoek
Willem Stolwijk
Board members (chairman, secretary and treasurer) do not receive compensation for their work for the foundation.
Business address
Secretary Foundation WaihonaPedia: Choorstraat 53 5211 KZ 's-Hertogenbosch
Visiting address: Broed 's-Hertogenbosch, GZG Terrein, Stergebouw, Burgemeester Loeffplein 70b/c 5211 RX 's-Hertogenbosch
Contact
KvK nr: 745 170 31 RSIN: 859 932 163 Bank: NL96 RABO 0344 4904 32
