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Additional Resources

Listed below are organizations and support groups that may be helpful to families and patients:

About Face

The American Academy of Dermatology
930 N. Meacham Road
Schaumburg, IL 60173
888-462-DERM (3376)

Association of Birth Defect Children
930 Woodcock Road, Suite 225
Orlando, FL 32803
407-245-7035 information line
800-313-ABDC to request questionnaires & information packets

Children Anguished with Lymphatic Malformation (CALM)
1141 Prestiege
Frisco, Texas 75034
email: staycalm@juno.com

P.O. Box 11082
Chattanooga, TN 37401
800-3-FACES-3 (332-2373)
email: faces@mindspring.com

The Foundation for Faces of Children
258 Harvard St., #367
Brookline, MA 02446

Greater Boston Lymphedema Network
Contact: Marianne Lynnworth
77 Graymore Road
Waltham, MA 02451
email: lacoly@aol.com

Hemangioma Hope
8400 Rohl Road
North East, PA 16428
email: CDouganHH@aol.com

Hemangioma Newsline
P.O. Box 38264
Greensboro, NC 27438
email: hemangnews@msn.com

K-T (Klippel-Trenaunay) Support Group
5404 Dundee Road
Edina, MN 55436
612- 925-2596
email: jvessey@uswest.net

Let's Face It
P.O. Box 29972
Bellingham, WA 98228-1972
email: letsfaceit@faceit.org

National Lymphedema Network, Inc.
Latham Square
1611 Telegraph Avenue, Suite 1111
Oakland, CA 94612-213178
510-208-3110 (fax)

National Organization for Rare Disorders (NORD)
P.O. Box 8923
New Fairfield, CT 06812-8923
203-746-6481 (fax)

Parents Helping Parents
3041 Olcott Street
Santa Clara, CA 95054

Port Wine Stains Resource Guide

Proteus Syndrome Foundation
6235 Whetstone Drive
Colorado Springs, CO 80918
email: abscit@aol.com

The Sturge-Weber Foundation
P.O. Box 418
Mt. Freedom, NJ 07970
973-895-4846 (fax)
email: swf@sturge-weber.com

Vascular Birthmarks Foundation
Vascular Birthmarks Foundation
P.O. Box 106
Latham, NY 12110
877-VBF-LOOK (days)
877-VBF-4646 (evenings and weekends)
email: linda@birthmark.org

VHL Family Alliance
171 Clinton Road
Brookline, MA 02445-5815
800-767-4VHL (767-4845)
617-734-8223 (fax)
email: info@vhl.org

Please note: The preceding information is provided as a service to visitors to our Web site and does not represent an endorsement by the Vascular Birthmarks and Malformations Diagnostic and Treatment Center or an assurance that the information in these sites is accurate and up-to-date. The most reliable source of information about vascular anomalies is a specialist associated with a major hospital.