If you are confronted with a rare disorder, you will look for others who share the same experience. And for people who know more about it. When you get into contact with each other, a community is created, first in a loose form of people who meet each other on Social Media; for example in a (private) group.

As you involve more people, there is a need to organise the community as a foundation or association (e.g. to be able to receive donations). Ultimately, you also bind 'supporters' to your community, e.g. experts who are willing to support you.

On this path you need to organize the collective knowledge of your community: Meet the WaihonaPedia Foundation

The WaihonaPedia foundation can help your community to organize your knowledge, to allow your members a life-long learning path in which they feel supported (Impact 1) and when they have learned something share it with others (Impact 2!).

Waihona is a word used in the Hawaiian language and expresses a treasure, Pedia means: encyclopaedia.
So together; Families and Experts are working on a 'Waihona' of knowledge about and for our 'Waihona-s' made  possible with the help of the WaihonaPedia foundation.

About the website contents

All of the information contained within this site is for education purposes only. Please contact your doctor to get specific medical advice, diagnoses, and treatment. 

Use of this site is strictly at your own risk. 

WaihonaPedia is a platform where parents and experts share experiences and develop knowledge together. So it is not a knowledge base that is finished: WaihonaPedia is work in progress. 

If you find something that you think needs correction or clarification, please contact us:

team WaihonaPedia

Participants and Partners: