Kommunitetet

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.

Begivenhedskalender    

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.
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Kontaktoplysninger

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

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

Læs mere om vores fællesskab...

Vores frivillige og supportere

Voorzitter

RobHeethaar

Secretaris

ElsvanOverbruggen-Hartman

Director

Gerritjan Koekkoek

Penningmeester

Willemstolwijk

Opret forbindelse

Følg trin

Ellers skal du kontakte dit nationale ekspertisecenter

Vores vision


Samarbejde hjælper....

 

Samarbejde med andre familiegrupper giver mulighed for at dele viden, styrke fortalervirksomhed, samle ressourcer og fremskynde forskningen. Sammen styrker disse samarbejder enkeltpersoner, forstærker stemmer, fremmer behandlinger og øger bevidstheden, hvilket i sidste ende skaber positive forandringer.

Se vores nuværende partnere nedenfor

 

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Dansk

Cornelia de Lange foreningen

danmarknorgesverigefinland
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English

CdLS Foundation UK and Ireland

det forenede kongerigeirland
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Español

Asociación Española Síndrome de Cornelia de Lange (AESCdL)

spanien
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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.

tysklandøstrigschweiz
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Español

Comunidad Argentina del Sindrome Cornelia de Lange

argentina
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Português

Associação Brasileira Síndrome Cornélia de Lange

brasilien
{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Português, headerIconURL=, headerTitle=Associação Brasileira Síndrome Cornélia de Lange, showHeaderStatus=true, tileStatus=[]}
Italiano

Ass. Naz. di Volontariato Cornelia De Lange ONLUS

italien
{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Italiano, headerIconURL=, headerTitle=Ass. Naz. di Volontariato Cornelia De Lange ONLUS, showHeaderStatus=true, tileStatus=[]}
Português

Rarissimas - Associação Nacional de Deficiências Mentais e Raras

portugal
{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Português, headerIconURL=, headerTitle=Rarissimas - Associação Nacional de Deficiências Mentais e Raras, showHeaderStatus=true, tileStatus=[]}
Nederlands

Vereniging Cornelia de Lange syndroom

nederlandenebelgium
{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Nederlands, headerIconURL=, headerTitle=Vereniging Cornelia de Lange syndroom, showHeaderStatus=true, tileStatus=[]}
Français

ASSOCIATION FRANÇAISE DU SYNDROME DE CORNELIA DE LANGE

frankrigschweizbelgiumalgeriet
{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Français, headerIconURL=, headerTitle=ASSOCIATION FRANÇAISE DU SYNDROME DE CORNELIA DE LANGE, showHeaderStatus=true, tileStatus=[]}
Polski

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

polen
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English

the Cornelia de Lange Syndrome (CdLS) Foundation USA

forenede stater
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English

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

australiennye zealandmalaysiaphilippinernesingapore
{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=English, headerIconURL=, headerTitle=The Cornelia de Lange Syndrome Association (Australasia) Inc (CdLSA), showHeaderStatus=true, tileStatus=[]}
Español

Fundación CdLS COLOMBIA

colombia

Om indholdet af hjemmesiden

Alle oplysninger på dette websted er udelukkende til undervisningsformål. Det er din læge, der er det rette sted at få specifik medicinsk rådgivning, diagnoser og behandling. Brug af dette websted sker udelukkende på eget ansvar. Hvis du finder noget, som du mener, der skal rettes eller præciseres, bedes du give os besked på: 

Send en e-mail: info@cdlsWorld.org