Community

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.

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

Federatie WaihonaPedia
Postbus 1078
5200 BC, 'S-HERTOGENBOSCH

Bezoekadres
Groot Gasthuis
Burgemeester Loeffplein 70e/f
5211 RX 's-Hertogenbosch

Read more about our community...

Our Volunteers and Supporters...

Lid ALV

Prof. dr. Rob Heethaar

Lid Raad van Toezicht

Antoon Kuijpers

Projectleider

Andrea Morales

Director/Chairman

Gerritjan Koekkoek

Lid Raad van Toezicht

Willem Stolwijk

Get connected

Follow these steps...

Otherwise contact your national centre of expertise

Our vision


Collaboration helps....

Collaborating with other family communities offers shared knowledge, advocacy strength, pooled resources, and accelerated research progress. Together, these collaborations empower individuals, amplify voices, advance treatments, and raise awareness, ultimately driving positive change.

See our current partners below

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Nederlands

Marshall Smith Syndrome Research Foundation

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Nederlands

Vereniging Cornelia de Lange syndroom

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Nederlands

Stichting Pitt Hopkins Syndroom

netherlands
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Nederlands

Nederlandse Vereniging Williams Beuren Syndroom

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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