Community

WaihonaPedia



Ons doel is om het welzijn en het geluk van mensen met zeldzame aandoeningen en hun naasten te vergroten. Dit doen we door communities te ondersteunen zodat essentiële kennis van families en experts met elkaar kan worden gedeeld via ons online platform en door kennisworkshops te organiseren.

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.

Calendar of our events   

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.
Supports multiple communities
Supports
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Contact information

Secretariaat Stichting WaihonaPedia
Choorstraat 53
5211 KZ 's-Hertogenbosch

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

Read more about our community...

Our Volunteers and Supporters...

Voorzitter

Prof. dr. Rob Heethaar

Bestuurslid

Antoon Kuijpers

Secretaris

Els van Overbruggen-Hartman

Projectleider Voor Elkaar

Andrea Morales

Director

Gerritjan Koekkoek

Penningmeester

Willem Stolwijk

Get connected

Follow these steps...

Otherwise contact your national centre of expertise

Our vision


Our communities

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Nederlands

Marshall Smith Syndrome Research Foundation

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Nederlands

KansPlus

netherlands
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Nederlands

Vereniging Cornelia de Lange syndroom

netherlandsbelgium
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Nederlands

Stichting Pitt Hopkins Syndroom

netherlands
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Nederlands

Vereniging Angelman Syndroom Nederland

netherlandsbelgium
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Nederlands

Stichting Rubinstein-Taybi

netherlands
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Nederlands

Stichting Tubereuze Sclerosis Nederland

netherlands

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@rtsyndroom.nl