Our Communities...


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

Collaboration helps....

Collaborating with other family communities offers shared knowledge, advocacy strength, pooled resources, and accelerated research progress. Together, these collaborations empower individuals, amplify voices, advance treatments, and raise awareness, ultimately driving positive change.

See our current partners below

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Nederlands

Marshall Smith Syndrome Research Foundation

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Nederlands

Vereniging Cornelia de Lange syndroom

netherlandsbelgium
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Nederlands

Stichting Pitt Hopkins Syndroom

netherlands
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Nederlands

Nederlandse Vereniging Williams Beuren Syndroom

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Nederlands

Vereniging Angelman Syndroom Nederland

netherlandsbelgium
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Nederlands

Stichting Rubinstein-Taybi

netherlands
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Nederlands

Stichting Tubereuze Sclerosis Nederland

netherlands

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: info@rtsyndroom.nl