Stichting WaihonaPedia

a place to see, talk, learn and share !

WaihonaPedia support page


WaihonaPedia helps people with lifelong rare conditions

As families and carers, we learn and discover a lot

This experiential knowledge can be shared. That's why we talk about our openness philosophy. Together with friends and experts, we will solve questions about the rare condition.

Welcome on our place especially for care-intensive people.
WaihonaPedia responds to the needs of rare 'care-intensive people’ and their families, caregivers, teachers, doctors and therapists. These needs are;

  • personalized information based on best available information and experiences of others,
  • connection,
  • asking questions and getting answers
  • plan for the best possible quality of life

We do this by supporting international communities for these people. Explore the communities that already joined below to ho you can see and learn, know and share together with one of our communities. Can't find the community you're looking for? Request this to be supported

Our communities

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: