Federatie WaihonaPedia
Our goal is to increase the well-being and happiness of people with rare diseases and their loved ones. We do this by supporting communities so that essential knowledge from families and experts can be shared with each other through our online platform and by organising knowledge workshops.
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
En savoir plus sur notre communauté...
Nos Volontaires et Supporters
Antoon Kuijpers
Els van Overbruggen-Hartman
Andrea Morales
Gerritjan Koekkoek
Willem Stolwijk
La collaboration aide....
La collaboration avec d'autres communautés familiales permet de partager des connaissances, de défendre des intérêts, de mettre en commun des ressources et d'accélérer les progrès de la recherche. Ensemble, ces collaborations responsabilisent les individus, amplifient les voix, font progresser les traitements et sensibilisent l'opinion publique, ce qui, en fin de compte, entraîne des changements positifs.
Voir nos partenaires actuels ci-dessous
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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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
