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

Vores frivillige og supportere

Voorzitter

RobHeethaar

Secretaris

ElsvanOverbruggen-Hartman

Director

Gerritjan Koekkoek

Penningmeester

Willemstolwijk

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






RobHeethaar

Voorzitter Stichting WaihonaPeda

Sidehistorie
Senest ændret af Gerritjan Koekkoek den 2023/02/13 14:36
Oprettet af Gerritjan Koekkoek den 2023/02/13 14:36

Om indholdet af hjemmesiden

Alle oplysninger på dette websted er udelukkende til undervisningsformål. Det er din læge, der er det rette sted at få specifik medicinsk rådgivning, diagnoser og behandling. Brug af dette websted sker udelukkende på eget ansvar. Hvis du finder noget, som du mener, der skal rettes eller præciseres, bedes du give os besked på: 

Send en e-mail: info@cdlsWorld.org