Federatie 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.
Our approach
Read more about our community...
Our Volunteers and Supporters...
Prof. dr. Rob Heethaar
Antoon Kuijpers
Andrea Morales
Gerritjan Koekkoek
Willem Stolwijk
Collaboration helps....
Collaborating with other family communities offers shared knowledge, advocacy strength, pooled resources, and accelerated research progress. Together, these collaborations empower individuals, amplify voices, advance treatments, and raise awareness, ultimately driving positive change.
See our current partners below
Marshall Smith Syndrome Research Foundation
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Vereniging Cornelia de Lange syndroom
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Stichting Pitt Hopkins Syndroom
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Nederlandse Vereniging Williams Beuren Syndroom
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Vereniging Angelman Syndroom Nederland
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Stichting Rubinstein-Taybi
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Stichting Tubereuze Sclerosis Nederland
