CLOVES Syndrome Community was created in 2009 by Kristen Davis and Marc Cerabona after our daughter Riley was diagnosed with CLOVES. With Riley’s diagnosis in 2007, we searched the internet for information about this rare disease and only came up with medical literature and professional articles. We knew that if we were searching for connections to families impacted by this syndrome, that others were searching as well, and so the CLOVES Syndrome Community group and website was born. The website went live in December of 2009 and our community has been growing by leaps and bounds. In July of 2011, CLOVES Syndrome Community became a 501c3 not-for-profit organization.
CLOVES Syndrome Community was developed with the understanding that when parents and loved ones are informed, empowered, and connected with others facing similar challenges, they will be better equipped to support their child’s medical, emotional, and physical needs. CLOVES Syndrome Community is committed to creating the best quality of life possible for our children now and in the future, and is dedicated to helping our children cope, grow, and thrive in the face of this disease.
We would love to hear your feedback about the site, this organization and about any needs or questions you may have. Please email us at firstname.lastname@example.org or call 207-281-2130.
Executive Director - CLOVES Syndrome Community