We believe in equipping patients and their families with information.
We believe in collaborating with healthcare providers and researchers in order to improve the quality of our care.
What is the purpose of our research?
The purpose of our research is to help families and their healthcare providers learn more about how mutations in the CTCF gene can affect individuals.
On December 1, 2022, after two years of research, we published our first findings in an attempt to create a better definition of CRD. We hope this serves as a diving board into further research.
Find our study here.
We are currently in the process of planning our next research.
What if I want to participate in future research?
Email us (ctcf@emory.edu)! Once we get in touch we can schedule a Zoom call to get to know YOU and YOUR STORY to see if you’d be a good fit for any future research.