Community

Even though CTNNB1 Syndrome is a rare disease—impacting an estimated 1 in 35,000—our community of children, families, friends, researchers, healthcare professionals and partners has created a network that extends beyond individual geographies and genetics.

Right now, there are more than 430 families waiting for the development of treatments for their children. In fact, 250 families are currently represented in our Natural History Studies.

Where We Live

Worldwide locations CTNNB1

 If you are a CTNNB1 family, please check this list to see if you’re on the map. If not, please fill out this form.

Meet Our Dragonflies

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.

CTNNB1 Connect & Cure Podcast Logo
Once Upon a Gene podcast