Community

Federatie WaihonaPedia



Ons doel is om het welzijn en het geluk van mensen met zeldzame aandoeningen en hun naasten te vergroten. Dit doen we door de communities van deze mensen te ondersteunen zodat essentiële kennis van families en experts met elkaar kan worden gedeeld. Wij nodigen deze communities uit om met elkaar samen te werken binnen ons samenwerkingsverband.

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
Jheronimus Academy of Data Science
St. Janssingel 92
5211 DA ‘s-Hertogenbosch

Read more about our community...

Our board members and supporters

Lid Raad van Toezicht

Antoon Kuijpers

Projectleider

Andrea Morales

Deskundige Social Media en Toegankelijkheid van Informatie

Roos van der Horst

Director/Chairman

Gerritjan Koekkoek

Ervaringsdeskundige en Luisteraar in ons Netwerk

platformmanager (Sch)ouders Bianca Hierck

Ervarings- en Communicatie deskundige

Laura Wijnants

Lid Raad van Toezicht

Willem Stolwijk

Get connected

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Otherwise contact your national centre of expertise

Our vision