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:

  1. determine what information parents, relatives and carers need,
  2. 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

anbi.jpg

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

Our Volunteers and Supporters...

Voorzitter

Prof. dr. Rob Heethaar

Secretaris

Els van Overbruggen-Hartman

Director

Gerritjan Koekkoek

Penningmeester

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

wiki@waihonapedia.org

KvK nr: 745 170 31 RSIN: 859 932 163 Bank: NL96 RABO 0344 4904 32






Rob Heethaar

Voorzitter Stichting WaihonaPeda

Page history
Last modified by Gerritjan Koekkoek on 2022/06/22 14:09
Created by Gerritjan Koekkoek on 2021/07/07 14:15

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: info@cdlsWorld.org