Comunidade

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

A colaboração ajuda....

 

A colaboração com outras comunidades familiares oferece conhecimento partilhado, força de defesa, recursos comuns e progresso acelerado da investigação. Juntas, estas colaborações dão poder aos indivíduos, amplificam as vozes, fazem avançar os tratamentos e aumentam a consciencialização, conduzindo, em última análise, a uma mudança positiva.

Veja abaixo os nossos parceiros actuais

 

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Nederlands

Marshall Smith Syndrome Research Foundation

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Nederlands

Vereniging Cornelia de Lange syndroom

países baixosbélgica
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Nederlands

Stichting Pitt Hopkins Syndroom

países baixos
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Nederlands

Nederlandse Vereniging Williams Beuren Syndroom

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Nederlands

Vereniging Angelman Syndroom Nederland

países baixosbélgica
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Nederlands

Stichting Rubinstein-Taybi

países baixos
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Nederlands

Stichting Tubereuze Sclerosis Nederland

países baixos

Sobre o conteúdo do sítio web

 

Toda a informação contida neste WebSite é apenas para fins educativos. O local para obter aconselhamento médico específico, diagnósticos e tratamento é o seu médico. A utilização deste site é estritamente por sua conta e risco. Se encontrar algo que considere necessário corrigir ou esclarecer, por favor informe-nos em: 

Envie um e-mail: info@rtsyndroom.nl