Sibshops
Virtual opportunity for CTNNB1 siblings to play fun games and connect. More info here!
Caregiver Resources by State
Librarey
Created to help rare families find what they need more easily, Librarey was built from Sierra Phillips’ Disability Resource Guide. It is a search-based platform that brings rare families and researchers together towards the common goal of new treatments.
Courageous Parents Network
We highly recommend Courageous Parents Network, a non-profit organization that equips and empowers parents and caregivers of children with serious medical conditions through a range of resources and tools. These include videos, podcasts, printable guides, Guided Pathways, and blogs, offering insights and perspectives from both families and pediatric clinicians.