top of page
Our Champs

We have over 100 worldwide families in our Facebook group who have a family member with a diagnosis of the CHAMP1 gene mutation.  


The purpose of this Patient Support Group is to support families with the diagnosis and in turn provide a global community.  


Our community provides a place of belonging to those who feel isolated by CHAMP1 and to educate those outside the community about this diagnosis.

Here are some of our Champs....

bottom of page