Network of Partners

Expertise about rare diseases is rare. Organizations need to work together to offer the best possible advise for treatment or care! Communities around these rare diseases offer a unique knowlegde about which expert has unique knowledge.

The people that participate on WaihonaPedia learn lifelong. The same applies to experts. Our participants introduce (new) experts and through these experts we build relationships with the organizations behind these experts. This will result in a network of partners. 

In this way we can offer people looking for support the best possible list of partners.
We invite potential partners to propose to be invited to extend the WaihonaPedia partner network. 

A person with a certain rare disease is looking for a answer on 'behavior'. This question is evaluated by the community of people around this rare disease and the best possible expert can be found by evaluating the organizations connected to this rare disease


  • A organization has one or more experts.
  • One expert is an expert on one or more topics that are important for one or more diagnosis
  • A question is from/about ONE person with a diagnose
  • This person with a diagnose is connected to a regional community around that diagnose 
  • That regional community is connected to other regional communities around the same diagnose
  • The group of communities can recommend the best experts to the question holder
  • When matched expert and patient can exchange relevant contact information

About the website contents


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