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
Leggi di più sulla nostra comunità...
I nostri volontari e sostenitori...
RobHeethaar
ElsvanOverbruggen-Hartman
Gerritjan Koekkoek
Willemstolwijk
La collaborazione aiuta....
La collaborazione con altre comunità familiari offre conoscenze condivise, forza di difesa, risorse comuni e un'accelerazione dei progressi della ricerca. Insieme, queste collaborazioni danno potere alle persone, amplificano le voci, fanno progredire i trattamenti e aumentano la consapevolezza, portando infine a un cambiamento positivo.
Di seguito sono riportati i nostri attuali partner
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
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(CdLS) האגודה הישראלית תסמונת קורנליה דה לנגה
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Arbeitskreis Cornelia de Lange Syndrom e.V.
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Comunidad Argentina del Sindrome Cornelia de Lange
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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
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Vereniging Cornelia de Lange syndroom
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ASSOCIATION FRANÇAISE DU SYNDROME DE CORNELIA DE LANGE
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Stowarzyszenie Dzieci i Rodzin Cornelia de Lange Syndrom (CdLS) w Polsce
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the Cornelia de Lange Syndrome (CdLS) Foundation USA
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The Cornelia de Lange Syndrome Association (Australasia) Inc (CdLSA)
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Fundación CdLS COLOMBIA
