Communities and Partners

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 Facebook 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. 

The WaihonaPedia foundation is such a supporter; we want to help your community to do as much as possible for your community members (Impact!).

Our current communities

  1. Association Cornelia de Lange syndrome (CdLS)
  2. Pitt Hopkins Syndrome Foundation
  3. MSS Research Foundation (Marshall-Smith)
  4. Association Angelman Syndrome Netherlands
  5. Network for rare diseases (ZeldSamen, previously VG Network)
  6. Association Williams-Beuren Syndrome 
  7. Foundation Tuberous Sclerosis Netherlands
  8. Rubinstein-Taybi Syndrome Foundation

Partners for these communities

  • Amsterdam Medical Centre; Expertise Centre Pitt-Hopkins, Marshall-Smith-, Rubinstein-Taybi- and Cornelia de Lange-syndrome
  • 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: