Carney Complex Coalition is a charitable 501(c)(3) not-for-profit corporation committed to improving outcomes and quality of life for Carney complex patients world-wide. Our vision is the improved outcomes and quality of life of people living with Carney complex. Increase recognition and awareness of Carney complex including symptoms, diagnosis, and treatment options.
• Universal standard of care
. Provide resources for patients and physicians to guide treatment decisions and disease management including regular screenings.
• Research advancement*. o Improve standard of care by supporting the development of:
-International screening and monitoring guidelines
-Advanced surgical techniques for myxoma removal
o Increase understanding of the natural history of Carney complex by leading the development of:
-Burden of disease analysis and publication
-Validated, fit-for-purpose, quality of life metric(s) for Carney complex
o Support the development of approved (by local health authority) pharmaceutical therapeutic options for Carney complex including:
-Target(s) identification -- e.g., mechanism of action
-Translational research -- e.g., Carney complex cell line(s) and mouse model(s)
-Clinical trial(s)
*Note: patient registry establishment is key to achieving research goals
• Community development. Convene, provide resources to, and educate the Carney complex community to represent themselves as individuals and for the community with regulatory agencies, industry, and other stakeholders.
• Partner collaboration. Convene researchers, physicians, and patients within the Carney complex community. Connect and collaborate with disease communities associated with Carney complex (e.g., Cushing's Syndrome
