To Top
0-9 A B C D E F G H I J K L M N O P Q R S T U V W X Y Z


The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

CLOVES Syndrome Community


PO Box 406
West Kennebunk, ME 04094


(207) 281-2130

Email Address

[email protected]


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.

Please Note

The National Organization for Rare Disorders (NORD) web site, its databases, and the contents thereof are copyrighted by NORD. No part of the NORD web site, databases, or the contents may be copied in any way, including but not limited to the following: electronically downloading, storing in a retrieval system, or redistributing for any commercial purposes without the express written permission of NORD. Permission is hereby granted to print one hard copy of the information on an individual disease for your personal use, provided that such content is in no way modified, and the credit for the source (NORD) and NORD’s copyright notice are included on the printed copy. Any other electronic reproduction or other printed versions is strictly prohibited.

NORD's Rare Disease Information Database is copyrighted and may not be published without the written consent of NORD.