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
Læs mere om vores fællesskab...
Vores frivillige og supportere
Antoon Kuijpers
Els van Overbruggen-Hartman
Andrea Morales
Gerritjan Koekkoek
Willem Stolwijk
Samarbejde hjælper....
Samarbejde med andre familiegrupper giver mulighed for at dele viden, styrke fortalervirksomhed, samle ressourcer og fremskynde forskningen. Sammen styrker disse samarbejder enkeltpersoner, forstærker stemmer, fremmer behandlinger og øger bevidstheden, hvilket i sidste ende skaber positive forandringer.
Se vores nuværende partnere nedenfor
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
