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.


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 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!)

We are actively seeking support from corporate sponsors.  Ask your company if they would be willing to support us!

Donations to are now tax-deductible in the US, as we have been granted 501(c)(3) non-profit status.  Please consider donating today!


The first two facebook link requires acceptance to closed facebook groups. The first is for parents only and the second is for extended family members.  

Site © 2017 par Anthony W. Rose ( pour la sensibilisation mondiale au syndrome du CTNNB1. L’information présente sur ce site ne se substitue pas à un conseil médical personnalisé. Veuillez consulter un clinicien qualifié pour toutes questions concernant le diagnostic génétique, la gestion de la maladie et
la santé.