Site © 2017-2019 by CTNNB1 Syndrome Awareness Worldwide (CSAW).  The information contained in this site should not be construed as a substitute for personal medical advice. Please consult with a qualified clinician in all matters relating to genetic diagnosis, management and health. 



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Click on the title above to access the member forum. Please remember that all posts to this forum are publicly available, so be sensitive to privacy issues!  There is a closed CTNNB1 Syndrome Facebook page for parents only, so some discussions may be better to post there.


After achieving 501(c)(3) designation, we will be actively seeking support from corporate sponsors.  Ask your company if they would be willing to support us.

Donations to are currently not tax deductible in the US, as we haven't filed for 501(c)(3) non-profit status at this point. However, we are actively raising money to incorporate as a non-profit organization.  


Of course, we always appreciate financial contributions to support our mission. However, there are other ways that you can help too!  We are currently looking for:

  • Translators (English to French, English to German, English to your native language?) for the website.

  • Social Media Supporters

  • Fundraisers

  • Researchers

  • Meetup Organizers

  • Bug-Squashers (let us know if there are issues with the website!)