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.
Federatie WaihonaPedia
Federatie WaihonaPedia
Federatie WaihonaPedia
Federatie WaihonaPedia
Federatie WaihonaPedia
Federatie WaihonaPedia
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
Read more about our community... Calendar of our events Onderzoek Themakamers
Our board members and supporters
Lid Raad van Toezicht
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
