Społeczność

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.

Kalendarz naszych wydarzeń   

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.
Wspiera wiele społeczności
Wspiera
un

Informacje kontaktowe

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

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

Dowiedz się więcej o naszej społeczności...

Nasi Wolontariusze i Sympatycy...

Voorzitter

RobHeethaar

Secretaris

ElsvanOverbruggen-Hartman

Director

Gerritjan Koekkoek

Penningmeester

Willemstolwijk

Połącz się

Wykonaj poniższe kroki...

W przeciwnym razie skontaktuj się z krajowym centrum eksperckim

Nasza wizja


Współpraca pomaga....

 

Współpraca z innymi społecznościami rodzinnymi zapewnia wspólną wiedzę, siłę wsparcia, połączone zasoby i przyspieszony postęp badań. Razem, współpraca ta wzmacnia jednostki, wzmacnia głosy, przyspiesza leczenie i podnosi świadomość, ostatecznie napędzając pozytywne zmiany.

Zobacz naszych obecnych partnerów poniżej

 

$tileAside.imageLabel
Dansk

Cornelia de Lange foreningen

danianorwegiaszwecjafinlandia
{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Dansk, headerIconURL=, headerTitle=Cornelia de Lange foreningen, showHeaderStatus=true, tileStatus=[]}
English

CdLS Foundation UK and Ireland

zjednoczone królestwoirlandia
{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=English, headerIconURL=, headerTitle=CdLS Foundation UK and Ireland, showHeaderStatus=true, tileStatus=[]}
Español

Asociación Española Síndrome de Cornelia de Lange (AESCdL)

hiszpania
{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Español, headerIconURL=, headerTitle=Asociación Española Síndrome de Cornelia de Lange (AESCdL), showHeaderStatus=true, tileStatus=[]}
English

Canadian CdLS Foundation

lblflagcanada
{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=English, headerIconURL=, headerTitle=Canadian CdLS Foundation, showHeaderStatus=true, tileStatus=[]}
עברית

(CdLS) האגודה הישראלית תסמונת קורנליה דה לנגה

izrael
{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=עברית, headerIconURL=, headerTitle=(CdLS) האגודה הישראלית תסמונת קורנליה דה לנגה , showHeaderStatus=true, tileStatus=[]}
Deutsch

Arbeitskreis Cornelia de Lange Syndrom e.V.

niemcyaustriaszwajcaria
{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Deutsch, headerIconURL=, headerTitle=Arbeitskreis Cornelia de Lange Syndrom e.V. , showHeaderStatus=true, tileStatus=[]}
Español

Comunidad Argentina del Sindrome Cornelia de Lange

argentyna
{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Español, headerIconURL=, headerTitle=Comunidad Argentina del Sindrome Cornelia de Lange, showHeaderStatus=true, tileStatus=[]}
Português

Associação Brasileira Síndrome Cornélia de Lange

brazylia
{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

włochy
{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

portugalia
{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

niderlandybelgia
{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

francjaszwajcariabelgiaalgieria
{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

polska
{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=Polski, headerIconURL=, headerTitle=Stowarzyszenie Dzieci i Rodzin Cornelia de Lange Syndrom (CdLS) w Polsce, showHeaderStatus=true, tileStatus=[]}
English

the Cornelia de Lange Syndrome (CdLS) Foundation USA

stany zjednoczone
{showIcon=true, headerCSSIconClass=group-icon, serviceLabel=English, headerIconURL=, headerTitle=the Cornelia de Lange Syndrome (CdLS) Foundation USA, showHeaderStatus=true, tileStatus=[]}
English

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

australianowa zelandiamalajsiafilipinysingapur
{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

kolumbia

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