WaihonaPedia
Ons doel is om het welzijn en het geluk van mensen met zeldzame aandoeningen en hun naasten te vergroten. Dit doen we door communities te ondersteunen zodat essentiële kennis van families en experts met elkaar kan worden gedeeld via ons online platform en door kennisworkshops te organiseren.
mission
We will contribute to a better quality of life for families around a disease by helping communities to offer precisely that information to a family that will allow them to make the right decisions, to feel empowered with solutions and to get energy from support(ing) others with the same disease.
WaihonaPedia
WaihonaPedia
WaihonaPedia
WaihonaPedia
Our approach
We offer a platform to which communities around a rare disease can connect. Through our platform communities will help each other by sharing best practises. Also many of the complications in the disease are present in other diseases as well. Through our smart platform you can easily use the information provided by another disease and give it the details of your own disease.We are a non-profilt organization and will always protect the interests of our communities. We do not sell or provide informations to any other organization as the ever growing list of connected communities.
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Støtter
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Vores frivillige og supportere
Voorzitter
Prof. dr. Rob Heethaar
Bestuurslid
Antoon Kuijpers
Secretaris
Els van Overbruggen-Hartman
Projectleider Voor Elkaar
Andrea Morales
Director
Gerritjan Koekkoek
Penningmeester
Willem Stolwijk
Vores kommunitet
Marshall Smith Syndrome Research Foundation
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KansPlus
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Vereniging Cornelia de Lange syndroom
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Stichting Pitt Hopkins Syndroom
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Vereniging Angelman Syndroom Nederland
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Stichting Rubinstein-Taybi
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Stichting Tubereuze Sclerosis Nederland
