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About us
Rare disease care is more than medicine—it’s connection, understanding, and the people willing to move progress forward.
Who We Are
Carney Complex Coalition (CNCC) is the first and only not-for-profit organization dedicated to Carney complex. Our team understands the challenges faced by this community and is taking intentional steps to move it forward.
We are an independent, mission-driven organization, working to improve outcomes and quality of life for every person affected by Carney complex.
Our Story
The founders of the Carney Complex Coalition are deeply connected to the the condition—two are aunts of a patient, one is a patient’s mother, and one is patient herself. Their experiences navigating this rare condition provide invaluable insights into the challenges faced by Carney complex patients and their loved ones.
Drawing from their firsthand experiences, the founders established this organization to offer support, guidance, and advancement to those affected by Carney complex.
Members of the community have been instrumental in supporting this work. It has long been a shared vision and their knowledge, experience, advice and support continue to be vital.
Our Priorities
Our priorities focus on advancing research, improving standards of care, strengthening community, and building collaborative partnerships that broaden access to resources and support for those affected by Carney complex.