Why you should sign up
We are all affected by a rare condition, for different reasons. Perhaps you have the condition yourself, you are a parent, sibling, or you care for someone with a rare condition. Maybe you are a doctor, teacher or simply curious.
But what unites us is the understanding that sharing our experiences and knowledge is crucial.
You too have something to share, even if it is just to let people know you are involved. By listening, talking, learning and sharing again, we can make life with a rare condition more beautiful.
WaihonaPedia for families
Your Story
Tell us your story. Sharing stories helps families feel supported and creates a sense of community. Your story is important for all of us!
Discover
Discover a community of like-minded people and find support along your quest. Otherwise, start a community of your own - we'll help you. Either way, you are not alone!
Join
Become an active member of your community. Share, discuss, ask questions and contribute. Everyone knows something, together we know everything!
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
