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CLOVES Syndrome Community



Address

PO Box 406
West Kennebunk, ME 04094

Phone

(207) 281-2130

Email Address

clovessyndrome@gmail.com

Description

The mission of CLOVES Syndrome Community (CSC) is to support, educate, empower and improve the lives of those affected by CLOVES syndrome. Its vision is to have an improved quality of life for people with CLOVES syndrome. The goals of CSC include providing information and resources to educate others about CLOVES syndrome; fostering and promoting a supportive community; building and sustaining a broad base of funding sources to support their mission and goals; utilizing incoming funds to provide financial assistance to those impacted by CLOVES syndrome and to help offset medical travel/expenses and equipment needs; participating in and promoting CLOVES syndrome research to assist in a complete understanding of the disease. CLOVE syndrome (congenital lipomatous overgrowth, vascular malformations and epidermal nevi) was first identified in 2007. CLOVE syndrome is characterized by progressive, complex and mixed truncal vascular malformations, dysregulated adipose tissue associated with congenital lipomatous overgrowth and epidermal nevi. CLOVE syndrome may be associated with varying degrees of scoliosis and enlarged bony structures without progressive bony overgrowth. The presence of scoliosis/skeletal manifestations has led to the expansion of the acronym to CLOVES.

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