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You are not alone!

This organization exists for the purpose of welcoming and supporting new families as we work together to pave the way for a better future.
We are creating a path for children with CHAMP1 disorders to receive treatment through research and our community working together.

Here's How You Can Get Involved

Join Our Community

Become a member of our private family support Facebook group.

Learn More From Our Trusted Experts

Learn more about Champ1 and stay up to date with current research trends by watching the videos below.

Dr. Hakonarson from the Children's Hospital of Philadelphia explains the ongoing partnership and project.
Deborah Requesens explains how we have made Coriell Institute our Repository for CHAMP1

Get Involved

Learn more by watching this video on Simon’s Searchlight and sign up for the Champ1 Patient Registry below.

To register in CHAMP1’s Patient registry, sign up and enrol here.



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