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Where complexity
meets care
Supporting patients, families, clinicians, and researchers through awareness, trusted resources, advocacy, and connection.
Carney Complex Coalition
Carney Complex Coalition is a nonprofit organization dedicated to supporting individuals and families affected by Carney complex. We work to strengthen community, expand access to reliable resources, and advance understanding of this rare condition.
Living with a rare and complex disease can feel isolating. Through connection, education, advocacy, and collaboration, we are working toward a future grounded in compassion, knowledge, and possibility.
What we do
Support
We help patients and families access reliable information and connect with others navigating Carney complex.
Education
We are developing educational resources including content from our patient conference, to help patients, families, and providers better understand Carney complex.
Research
We support efforts to advance understanding of Carney complex and improve diagnosis, treatment, and
long-term outcomes.
Community
We bring the Carney complex community together through shared experiences, events, and opportunities for connection and support.