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!
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
![{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Nederlands, headerIconURL=, headerTitle=Nederlandse Vereniging Williams Beuren Syndroom, showHeaderStatus=true, tileStatus=[]}](/xwiki/bin/download/WaihonaPartners/angelman/WebHome/vasnlogo.png?keepAspectRatio=true&height=100&rev=1.2)
Vereniging Angelman Syndroom Nederland
![{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Nederlands, headerIconURL=, headerTitle=Vereniging Angelman Syndroom Nederland, showHeaderStatus=true, tileStatus=[]}](/xwiki/bin/download/WaihonaPartners/rts/WebHome/rtsLogo.svg?keepAspectRatio=true&height=100&rev=1.2)
Stichting Rubinstein-Taybi
![{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Nederlands, headerIconURL=, headerTitle=Stichting Rubinstein-Taybi, showHeaderStatus=true, tileStatus=[]}](/xwiki/bin/download/WaihonaPartners/stsn/WebHome/logo_stsn.png?keepAspectRatio=true&height=100&rev=1.1){kind=logo}
Stichting Tubereuze Sclerosis Nederland
