Comunidad

Federatie WaihonaPedia



Our goal is to increase the well-being and happiness of people with rare diseases and their loved ones. We do this by supporting communities so that essential knowledge from families and experts can be shared with each other through our online platform and by organising knowledge workshops.

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.

Calendario de nuestros eventos   

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.
Apoya a múltiples comunidades
Apoya
un

Información de contacto

Secretariaat Stichting WaihonaPedia
Choorstraat 53
5211 KZ 's-Hertogenbosch

Bezoekadres
Broed 's-Hertogenbosch,
Burgemeester Loeffplein 70b/c
5211 RX 's-Hertogenbosch

Lea más sobre nuestra comunidad...

Nuestros voluntarios y colaboradores ...

Voorzitter

Prof. dr. Rob Heethaar

Bestuurslid

Antoon Kuijpers

Secretaris

Els van Overbruggen-Hartman

Projectleider

Andrea Morales

Director

Gerritjan Koekkoek

Penningmeester

Willem Stolwijk

Conéctese

Sigue estos pasos ...

De lo contrario, póngase en contacto con su centro nacional de expertos

Nuestra visión


Nuestras comunidades

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Nederlands

Marshall Smith Syndrome Research Foundation

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KansPlus

países bajos
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Nederlands

Vereniging Cornelia de Lange syndroom

países bajosbélgica
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Nederlands

Stichting Pitt Hopkins Syndroom

países bajos
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Nederlands

Nederlandse Vereniging Williams Beuren Syndroom

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Nederlands

Vereniging Angelman Syndroom Nederland

países bajosbélgica
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Nederlands

Stichting Rubinstein-Taybi

países bajos
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Nederlands

Stichting Tubereuze Sclerosis Nederland

países bajos

Sobre el contenido del sitio web

 

Toda la información contenida en este sitio web tiene únicamente fines educativos. El lugar para obtener consejos médicos específicos, diagnósticos y tratamientos es su médico. El uso de este sitio es estrictamente bajo su propio riesgo. Si encuentra algo que cree que necesita ser corregido o aclarado, por favor háganoslo saber en: 

Envíe un correo electrónico: info@rtsyndroom.nl