Vascular Anomalies Center Patient Resources

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

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AboutFace USA

P.O. Box 158
South Beloit, IL 61080
888-486-1209
Fax: 702-341-5351
email: info@aboutfaceusa.org

The American Academy of Dermatology

930 N. Meacham Road
Schaumburg, IL 60173
847-330-0230
888-462-DERM (3376)

Birth Defects Research for Children, Inc.

800 Celebration Drive, Suite 225
Celebration, FL 34747

Blue Rubber Bleb Nevus Facebook Support Group 
Website: https://www.facebook.com/groups/bluerubberbleb

CLOVES Syndrome Community

PO Box 406
West Kennebunk, ME 04094 
207-281-2130
email: CLOVESsyndrome@gmail.com

Cloves Syndrome Foundation

PO Box 2571
Forest, Virginia 24551
email: info@clovessyndromefoundation.org

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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
email:info@facesofchildren.org

Greater Boston Lymphedema Network

Contact: Dottie Fitzgerald
617-484-2769
email:
fitzijr@msn.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

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K-T (Klippel-Trenaunay) Support Group

5404 Dundee Road
Edina, MN 55436
612- 925-2596
email: jvessey@uswest.net

Lymphangiomatosis & Gorham Disease Alliance

19919 Villa Lante Place
Boca Raton, FL  33434
561-441-9766

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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)

55 Kenosia Avenue
P.O. Box 1968
Danbury, CT 06813-1968
203-744-0100
800-999-6673
203-746-6481 (fax)

Parents Helping Parents

3041 Olcott Street
Santa Clara, CA 95054
408-727-5775

Proteus Syndrome Foundation

6235 Whetstone Drive
Colorado Springs, CO 80918
719-264-8445
email: abscit@aol.com

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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

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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 Anomalies 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.

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The future of pediatrics will be forged by thinking differently, breaking paradigms and joining together in a shared vision of tackling the toughest challenges before us.”
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