Where We Live
How We’re Affected
The symptoms of CTNNB1 Syndrome vary widely across known cases as well as the extent to which the CTNNB1 gene has been deleted or mutated, which is identified through genetic testing. Based on the 2023 CTNNB1 Symptoms Survey, here’s a snapshot look at how our community experiences this rare condition.
If you are a CTNNB1 family and you haven’t filled out the Symptoms Survey yet, please do so here!
Meet Our Champions
Get to know us beyond the diagnosis! Our children are champions that thrive with the love and care of their families, friends and medical teams. See their smiles and read their stories.
Listen to Our Stories
Tune into the CTNNB1 Connect and Cure Podcast, hosted by CTNNB1 mom Annie Wood, to learn more about CTNNB1 Syndrome and the Once Upon a Gene Podcast, hosted by CTNNB1 mom Effie Parks, to hear stories from others in the rare disease community.