Comunauté

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

 

1

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!

2

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!

3

Join

Become an active member of your community. Share, discuss, ask questions and contribute. Everyone knows something, together we know everything!

So join one of our communities today!

Click here to register

Check out our communities at the bottom of these pages, you can also register with them directly

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

 

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Nederlands

Marshall Smith Syndrome Research Foundation

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Nederlands

Vereniging Cornelia de Lange syndroom

pays-basbelgique
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Nederlands

Stichting Pitt Hopkins Syndroom

pays-bas
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Nederlands

Nederlandse Vereniging Williams Beuren Syndroom

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Nederlands

Vereniging Angelman Syndroom Nederland

pays-basbelgique
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Nederlands

Stichting Rubinstein-Taybi

pays-bas
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Nederlands

Stichting Tubereuze Sclerosis Nederland

pays-bas

À propos du contenu du site Web

 

Toutes les informations contenues dans ce site Web sont uniquement destinées à des fins éducatives. Pour obtenir des conseils, des diagnostics et des traitements médicaux spécifiques, adressez-vous à votre médecin. L'utilisation de ce site est strictement à vos propres risques. Si vous trouvez quelque chose qui, selon vous, nécessite une correction ou une clarification, veuillez nous en faire part à l'adresse suivante : 

Envoyez un courriel : info@rtsyndroom.nl