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
847-330-0230
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
972-377-4326
email: staycalm@juno.com
Faces
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
617-355-8299
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
814-898-8299
email: CDouganHH@aol.com
Hemangioma
Newsline
P.O. Box 38264
Greensboro, NC 27438
336-282-9774
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
360-676-7325
email: letsfaceit@faceit.org
National Lymphedema
Network, Inc.
Latham Square
1611 Telegraph Avenue, Suite 1111
Oakland, CA 94612-213178
800-541-3259
510-208-3200
510-208-3110 (fax)
National
Organization for Rare Disorders (NORD)
P.O. Box 8923
New Fairfield, CT 06812-8923
203-746-6518
800-999-6673
203-746-6481 (fax)
Parents Helping Parents
3041 Olcott Street
Santa Clara, CA 95054
408-727-5775
Port Wine Stains
Resource Guide
Proteus
Syndrome Foundation
6235 Whetstone Drive
Colorado Springs, CO 80918
719-264-8445
email: abscit@aol.com
The Sturge-Weber
Foundation
P.O. Box 418
Mt. Freedom, NJ 07970
973-895-4445
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)
617-277-5667
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.