Community

Stichting WaihonaPedia



We believe that the right knowledge about rare diseases increases the happiness and well-being of people with these diseases, their parents, their sisters and brothers, their families and their friends.
We do this by sharing essential and useful knowledge of parents and experts.
We use an online platform to make the right knowledge available. Knowledge workshops can also be organised on this platform.

mission

We will contribute to a better quality of life for families around a disease by helping communities to offer precisely that information to a family that will allow them to make the right decisions, to feel empowered with solutions and to get energy from support(ing) others with the same disease.

Calendar of our events   

Our approach

We offer a platform to which communities around a rare disease can connect. Through our platform communities will help each other by sharing best practises. Also many of the complications in the disease are present in other diseases as well. Through our smart platform you can easily use the information provided by another disease and give it the details of your own disease.We are a non-profilt organization and will always protect the interests of our communities. We do not sell or provide informations to any other organization as the ever growing list of connected communities.
Supports multiple communities
Supports
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Contact information

Secretariaat Stichting WaihonaPedia:
Choorstraat 53  5211 KZ 's-Hertogenbosch

Bezoekadres: GZG Terrein, Stergebouw, Burgemeester Loeffplein 70b/c 5211 RX 's-Hertogenbosch

Read more about our community...

Our Volunteers and Supporters...

Voorzitter

RobHeethaar

Secretaris

ElsvanOverbruggen-Hartman

Director

Gerritjan Koekkoek

Penningmeester

Willemstolwijk

Get connected

Follow these steps...

Otherwise contact your national centre of expertise

Our vision


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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Dansk

Cornelia de Lange foreningen

denmarknorwayswedenfinland
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English

CdLS Foundation UK and Ireland

united kingdomireland
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Español

Asociación Española Síndrome de Cornelia de Lange (AESCdL)

spain
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English

Canadian CdLS Foundation

lblflagcanada
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עברית

(CdLS) האגודה הישראלית תסמונת קורנליה דה לנגה

israel
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Deutsch

Arbeitskreis Cornelia de Lange Syndrom e.V.

germanyaustriaswitzerland
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Español

Comunidad Argentina del Sindrome Cornelia de Lange

argentina
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Português

Associação Brasileira Síndrome Cornélia de Lange

brazil
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Italiano

Ass. Naz. di Volontariato Cornelia De Lange ONLUS

italy
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Português

Rarissimas - Associação Nacional de Deficiências Mentais e Raras

portugal
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Nederlands

Vereniging Cornelia de Lange syndroom

netherlandsbelgium
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Français

ASSOCIATION FRANÇAISE DU SYNDROME DE CORNELIA DE LANGE

franceswitzerlandbelgiumalgeria
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Polski

Stowarzyszenie Dzieci i Rodzin Cornelia de Lange Syndrom (CdLS) w Polsce

poland
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English

the Cornelia de Lange Syndrome (CdLS) Foundation USA

united states
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English

The Cornelia de Lange Syndrome Association (Australasia) Inc (CdLSA)

australianew zealandmalaysiaphilippinessingapore
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Español

Fundación CdLS COLOMBIA

colombia

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: info@cdlsWorld.org