Support Groups


About Face

Rickie Gill Executive Director  
PO Box 969  
Batavia, IL 60510-0969  

Angioma Alliance

Quaker Meeting House Road  
Williamsburg, VA 23188  

Anomalie Vasculaire:  Founded in Quebec by Lisa Doust this organization partners with NOVA and other US based groups to bring support and information in French.

Cleft Advocate

 Debbie Oliver Program Coordinator  A program of About Face USA
702-769-9264 Includes Pathfinder Counselors to help bridge the gap between the medical community and families  

The Cleft Palate Foundation

 104 Estes Ddrive Suite 204  
Chapel Hill, NC 27514  
188-24 Cleft  

Cloves Syndrome Foundation




 The CLOVES Syndrome Foundation is focused on improving the lives of CLOVES patients by funding Overgrowth and Vascular Anomaly research.  Our foundation is committed to raising public awareness and providing member support by offering educational literature and resources while also establishing support networks within the medical and overgrowth communities”;

 Cloves Syndrome Community

PO Box 406 West Kennebunk, ME  04094

 Cloves Syndrome Commuinty provdes support, information and hope to children, families and their loved ones.  The CSC was developed with the understanding that when patients, and parents are empowered and connected with others facing similar challenges, they will be better equipped to support their child or their own medical, emotional and physical needs. 

Faces-The National Craniofacial Association

PO Box 11082  Chattanooga, TN 37401  
Stephanie Hale Program Director  

Healing the Children

PO Box 420 Butler, NJ 07405  
Fax 973-492-8299  

Hemangioma Treatment Foundation

Dr. Marcelo Hochman Founder  
2097 Henry Tecklenburg Drive  
Suite 212 West  
Charelston, SC 29416  

KT Foundation

Mark Metcalf- Executive Director  
PO Box 205  
Lakeview, NC 28350  

KT Support Group

4610 Woodale Ave  
Edian, MN 55424  
952-925-2596 Judey Vessey Contact  
623 975-6902 Kathy Temonto AZ state contact  

Love Without Borders  

Lymphatic Research Foundation


 40 Garview Point Rd Glen Cove NY  

Lymphangiomatosis & Gorham’s Disease Alliance (LGD Alliance)

19919 Villa Lante Place  
Boca Raton, FL 33434  
Phone: (561) 441-9766 (8:30 a.m. – 5 p.m. EST, Monday – Friday)  

NORD-National Organization of Rare Disease

PO Box 8923
New Fairfield, CT 06812-8923  

Sturge Weber Foundation

Karen Ball Executive Director  
PO Box 418  
MT Freedom, NJ 07970  

 Vascular Birthmark Foundation

Linda R. Shannon, PhD Founder  
 PO box 106 Lantham, NY  12110

Volunteer Center of Greensboro

Revised list 07-2011  
NOVA is a 501c3a organization. All donations are tax deductible. NOVA was originally founded as Hemangioma Newsline.
Contact Web Master:     PO Box 38216 Greensboro, NC 27438-8216

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