Community

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

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

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Nederlands

Marshall Smith Syndrome Research Foundation

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Nederlands

Vereniging Cornelia de Lange syndroom

netherlandsbelgium
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Nederlands

Stichting Pitt Hopkins Syndroom

netherlands
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Nederlands

Nederlandse Vereniging Williams Beuren Syndroom

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Nederlands

Vereniging Angelman Syndroom Nederland

netherlandsbelgium
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Nederlands

Stichting Rubinstein-Taybi

netherlands
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Nederlands

Stichting Tubereuze Sclerosis Nederland

netherlands

About the website contents

 

All of the information on this WebSite is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know at: 

Send a email: wiki@waihonapedia.org