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.
Our approach
Leia mais sobre a nossa comunidade...
Os nossos Voluntários e Apoiantes...
RobHeethaar
ElsvanOverbruggen-Hartman
Gerritjan Koekkoek
Willemstolwijk
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
Cornelia de Lange foreningen
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CdLS Foundation UK and Ireland
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Asociación Española Síndrome de Cornelia de Lange (AESCdL)
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Canadian CdLS Foundation
![{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=English, headerIconURL=, headerTitle=Canadian CdLS Foundation, showHeaderStatus=true, tileStatus=[]}](/xwiki/bin/download/WaihonaPartners/cdlsIsrael/WebHome/logoIsrael2.png?keepAspectRatio=true&height=100&rev=1.3)
(CdLS) האגודה הישראלית תסמונת קורנליה דה לנגה
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Arbeitskreis Cornelia de Lange Syndrom e.V.
![{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Deutsch, headerIconURL=, headerTitle=Arbeitskreis Cornelia de Lange Syndrom e.V. , showHeaderStatus=true, tileStatus=[]}](/xwiki/bin/download/WaihonaPartners/Argentina/WebHome/ArgentinaLogo2.jpg?keepAspectRatio=true&height=100&rev=1.2)
Comunidad Argentina del Sindrome Cornelia de Lange
![{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Español, headerIconURL=, headerTitle=Comunidad Argentina del Sindrome Cornelia de Lange, showHeaderStatus=true, tileStatus=[]}](/xwiki/bin/download/WaihonaPartners/Brazil/WebHome/cdls-fundacao-sindrome-cornelia-de-lange.png?keepAspectRatio=true&height=100&rev=1.1)
Associação Brasileira Síndrome Cornélia de Lange
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Ass. Naz. di Volontariato Cornelia De Lange ONLUS
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Rarissimas - Associação Nacional de Deficiências Mentais e Raras
![{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Português, headerIconURL=, headerTitle=Rarissimas - Associação Nacional de Deficiências Mentais e Raras, showHeaderStatus=true, tileStatus=[]}](/xwiki/bin/download/WaihonaPartners/Netherlands/WebHome/cdls-nl-logo.png?keepAspectRatio=true&height=100&rev=1.1){kind=logo}
Vereniging Cornelia de Lange syndroom
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ASSOCIATION FRANÇAISE DU SYNDROME DE CORNELIA DE LANGE
![{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Français, headerIconURL=, headerTitle=ASSOCIATION FRANÇAISE DU SYNDROME DE CORNELIA DE LANGE, showHeaderStatus=true, tileStatus=[]}](/xwiki/bin/download/WaihonaPartners/Poland/WebHome/plflag.gif?keepAspectRatio=true&height=100&rev=1.1)
Stowarzyszenie Dzieci i Rodzin Cornelia de Lange Syndrom (CdLS) w Polsce
![{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Polski, headerIconURL=, headerTitle=Stowarzyszenie Dzieci i Rodzin Cornelia de Lange Syndrom (CdLS) w Polsce, showHeaderStatus=true, tileStatus=[]}](/xwiki/bin/download/WaihonaPartners/USA/WebHome/cdls-logo.gif?keepAspectRatio=true&height=100&rev=1.1){kind=logo}
the Cornelia de Lange Syndrome (CdLS) Foundation USA
![{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=English, headerIconURL=, headerTitle=the Cornelia de Lange Syndrome (CdLS) Foundation USA, showHeaderStatus=true, tileStatus=[]}](/xwiki/bin/download/WaihonaPartners/Australia/WebHome/logo.png?keepAspectRatio=true&height=100&rev=1.1){kind=logo}
The Cornelia de Lange Syndrome Association (Australasia) Inc (CdLSA)
![{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=English, headerIconURL=, headerTitle=The Cornelia de Lange Syndrome Association (Australasia) Inc (CdLSA), showHeaderStatus=true, tileStatus=[]}](/xwiki/bin/download/WaihonaPartners/Colombia/WebHome/colombia.png?keepAspectRatio=true&height=100&rev=1.1)
Fundación CdLS COLOMBIA
