Patient Advocacy Groups
Contact Office
Contact Office
PO Box 418
Mt. Freedom, NJ 07970-0418
Phone: (973) 895-4445
Fax: (973) 895-4846
Contact: Karen Ball
Email: kball@sturge-weber.com
Patient Advocate Groups
Alopecia Areata
National Alopecia Areata Foundation
14 Mitchell Boulevard
San Rafael, CA 94903-1953
(P) 415-472-3780 (F)415-472-5343
Email info@naaf.org
Website www.naaf.org
American Skin Association, Inc.
American Skin Association
346 Park Avenue South, 4th Floor
New York, NY 10010
(P) 212-889-4858 (F)212-889-4959
Email info@americanskin.org
Website www.americanskin.org
Basal Cell Carcinoma Nevus Syndrome / Gorlin Syndrome
BCCNS Life Support Network
PO Box 321
Burton, OH 44021
(P) 440-635-0078Â (F) 440-635-0267
Email info@bccns.org
Website www.bccns.org
Cicatricial Alopecia
Cicatricial Alopecia Research Foundation
PO Box 64158
Los Angeles, CA 90064
(P) 310-475-2419 (F) 310-475-4883
Email info@carfintl.org
Website www.carfintl.org
Cutaneous Lymphoma
Cutaneous Lymphoma Foundation
P.O. Box 374
Birmingham, MI 48102
(P) 248-644-9014Â (F) 248-644-9014
Email info@clfoundation.org
Website www.clfoundation.org
Dermatitis Herpetiformis
Gluten Intolerance Group
15110 10th Avenue SW, Suite A
Seattle, WA 98166
(P) 206-246-6652 (F) 206-246-6531
Email info@gluten.net
Website www.gluten.net
Dystrphic Epidermolysis Bullos
DebRA of America, Inc.
5 West 36th Street, Suite 404
New York, NY 10018
(P) 212-868-1573 (F) 212-868-9296
Email Debra.nurse@mindspring.org
Website www.debra.org
Ectodermal Dysplasias
National Foundation for Ectodermal Dysplasias
410 E. Main Street
Mascoutah, IL 62258
(P) 618-566-2020 (F) 618-566-4718
Email info@nfed.org
Website www.nfed.org
Eczema
National Eczema Association for
Science and Education (N.E.A.S.E.)
4460 Redwood Hwy, Suite 16 D
San Rafael, CA 94903
(P) 415-499-3474Â (F) 415-472-5345
Email info@nationaleczema.org
Website www.nationaleczema.org
Ehlers Danlos
Ehlers Danlos National Foundation
3200 Wilshire Blvd., Ste 1601
Los Angeles, CA 90010
(P)213-368-3800 (F) 213-427-0057
Email staff@ednf.org
Website www.ednf.org
Hemangioma
National Organization of Vascular Anomalies
8711-104 6 Forks Road PMG 126
Raleigh, NC 27615
(P) 419-425-1589 (F) 419-425-1589
Email admin@mail.novanews.org
Website www.novanews.org
Ichthyosis
Foundation for Ichthyosis and Related Skin Types
1601 S. Valley Forge Road, Ste 10
Lansdale, PA 19446
(P) 215-631-1411 (F) 215-631-1413
Email info@scalyskin.org
Website www.scalyskin.org
Inflammatory Skin Disorders
Inflammatory Skin Disease Institute
P.O. Box 1074
Newport News, VA 23601
(P) 757-223-0795Â (F) 757-595-1842
Email ExDirISDI@aol.com
Website www.isdionline.org
Marfan Syndrome
National Marfan Foundation
22 Manhasset Avenue
Port Washington, NY 11050
(P) 516-883-8712 (F) 516-883-8040
Email jgrima@marfan.org
Website www.marfan.org
National Association for Pseudoxanthoma Elasticum, Inc
NAPE IN
8760 Manchester Rd.
St. Louis, MO 63144-2724
(P) 1-314-962-0100 (F)Â 1-314-962-0100
Email NAPEStLouis@sbcglobal.net
Website www.pxenape.org
Pachyonychia Congenita
Pachyonychia Congenita Project
2386 E. Heritage Way, Ste B
Salt Lake City, UT 84109
(P)877-628-7300Â (F) 877-628-7399
E-mail info@PC-Project.org
Website www.PC-Project.org
Pemphigus
International Pemphigus Foundation
1540 River Park Drive, Suite 208
Sacramento, CA 95818
(P)916-922-1298Â (F)510-527-8497
Email info@pemphigus.org
Website www.pemphigus.org
Pseudoxanthoma Elasticum
PXE International, Inc.
4301 Connecticut Ave., NW-Suite 404
Washington DC 20008
(P) 202-362-9599 (F) 202-966-8553
Email info@pxe.org
Website www.pxe.org
Psoriasis
National Psoriasis Foundation
6600 SW 92nd, Suite 300
Portland, OR 97223
(P) 503-546-8366Â (F) 503-245-0626
Email Getinfo@psoriasis.org
Website www.psoriasis.org
Sturge-Weber Syndrome
Port Wine Stains/ Klippel-Trenaunay
The Sturge-Weber Foundation
P.O.Box 418
Mt. Freedom, NJ 07970
(P) 973-895-4445 (F) 973-895-4846
Email kball@sturge-weber.com
Website www.sturge-weber.com
Vitiligo
Vitiligo Support International, Inc
P.O. Box 4008
Valley Village, CA 91617-0008
(Ph) 818-752-9002 (F) 818-907-1511
E-mail info@VitiligoSupport.org
Website www.VitiligoSupport.org
Xeroderma Pigmentosum
Xeroderma Pigmentosum Society
437 Snydertown Road
Craryville, NY 12521
(P) 518-851-2612 (F)518-851-2612
Email xps@xps.org
Website www.xps.org
Xeroderma Pigmentosum/Skin Cancer
XP Skin Cancer Foundation
5060 Taylor Road
Cleveland, OH 44128
(P) 216-518-9014 (F) 216-518-9366
Email John@xpfoundation.org
Website www.xpfoundation.org