better life with a rare condition

As families and carers we learn and discover a lot. You can share this experience on WaihonaPedia.

Building and securing knowledge together with experts. To achieve a better quality of life for your whole family.

See our dream


How does it work

We think alike the communities around the rare disease (e.g. a foundation, association or just a group of people). These communities seek collaboration and get support from experts, both the medical as well as the social (care and education) experts. By sharing experiences in which theme solution and questions are written we will be confirmed about solutions we already know but more important we learn what we do not yet know. We can ask questions to each-other and support each-other.
Researchers will help us finding solutions and for this we share our data with them.

Think of a WaihonaPedia as a 265 day conference, where you can participate when you want, for free!


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All of the information contained within these questions and answers 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: