Member Organizations
Basal Cell Carcinoma Nevus Syndrome/Gorlin Syndrome
BCCNS Life Support Network
Kristi Schmitt Burr, Executive Director
P. O. Box 321
Burton, OH 44021
Tel: 440.834.0011
Fax: 440.834.0132
E-mail: info@bccns.org
Web: www.bccns.org
Cicatricial Alopecia Research Foundation
CARF
Sheila Belkin, CEO
P. O. Box 64158
Los Angeles, CA 90064
Tel: 310.475.2419
Fax: 310.475.4883
E-mail: info@carfintl.org
Web: www.carfintl.org
Cutaneous Lymphoma Foundation
Judy Jones, President
P. O. Box 374
Birmingham, MI 48012
Tel: 248.644.9014
Fax: 248.644.9014
E-mail: info@clfoundation.org
Web: www.clfoundation.org
Ehlers Danlos National Foundation
EDNF
Cynthia Lauren, Executive Director
3200 Wilshire Blvd., Suite 1601, South Tower
Los Angeles, CA 90010
Tel: 213.368.3800
Fax: 213.427.0057
E-mail: clauren@ednf.org
Web: www.ednf.org
Foundation for Ichthyosis and Related Skin Types
FIRST
Jean Pickford, Executive Director
1364 Welsh Road, G2
North Wales, PA 19454
Tel: 215.619.0670
Fax: 215.619.0780
E-mail: jpickford@firstskinfoundation.org
Web: www.firstskinfoundation.org
Hidradenitis Suppurativa Foundation, Inc.
Michelle Barlow, Executive Director and CEO
7895 Via Belfiore #4
San Diego, CA 92129
E-mail: info@hs-foundation.org
Web: www.hs-foundation.org
Inflammatory Skin Disease Institute
ISDI
LaDonna Williams, Director
PO Box 1074
Newport News, VA 23601
Tel: 757.223.0795
Fax: 757.595.1842
E-mail: LaDonna.Williams@isdionline.org
Web: www.isdionline.org
International Pemphigus Pemphigoid Foundation
IPPF
Molly Stuart, Chief Executive Officer
2701 Cottage Way, Suite 16
Sacramento, CA 95825
Tel: 916.922.1298
Fax: 510. 527.8497
E-mail: info@pemphigus.org
Web: www.pemphigus.org
National Alopecia Areata Foundation
NAAF
Vicki Kalabokes, Executive Director
14 Mitchell Blvd.
San Rafael, CA 94903-1953
Tel: 415.472.3780
Fax: 415.472.5343
E-mail: info@naaf.org
Web: www.naaf.org
National Eczema Association
NEA
Vicki Kalabokes, CEO
4460 Redwood Hwy., Suite 16D
San Rafael, CA 94903
Tel: 415.499.3474
Fax: 415.472.5345
E-mail: info@nationaleczema.org
Web: www.nationaleczema.org
CSD Representative: Irene Crosby (NEA Volunteer Patient Advocate)
National Foundation for Ectodermal Dysplasias
NFED
Malinda Heuring, Director of Education
PO Box 114
Mascoutah, IL 62258
Tel: 618.566.2020
Fax: 618.566.4718
E-mail: info@nfed.org
Web: www.nfed.org
National Psoriasis Foundation
Randy Beranek, President and CEO
6600 S.W. 92nd Ave., Suite 300
Portland, OR 97223-7195
Tel: 503.244.7404
Fax: 503.245.0626
E-mail: getinfo@psoriasis.org
Web: www.psoriasis.org
Nevus Outreach, Inc.
Mark Beckwith, Executive Director
600 South Delaware Avenue
Suite 200
Bartlesville, OK 74003
Tel: 918.440.6123
E-mail: mbeckwith@mevus.org
Web: www.nevus.org
Pachyonychia Congenita Project
Mary Schwartz, Director
2386 E. Heritage Way, Suite B
Salt Lake City, UT 84109
Tel: 877.628.7300
Fax: 877.628.7399
E-mail: Mary.Schwartz@pachyonchia.org
Web: www.pachyonychia.org
PXE International
Christine Vocke, Director
4301 Connecticut Ave. NW
Suite 404
Tel: 202.362.9599
Fax: 202.966.8553
E-mail: info@pxe.org
Web: www.pxe.org
The Sturge-Weber Foundation
Karen Ball, President and CEO
P. O. Box 418
Mt. Freedom, NJ 07970
Tel: 973.895.4445
Fax: 973.895.4846
E-mail: kball@sturge-weber.org
Web: www.sturge-weber.org
Vitiligo Support International
Jackie Gardner, Executive Director
West Coast Office:
P. O. Box 4008, Valley Village, CA 91617-0008
Tel: 818.752.9002
Fax: 818.337.7268
East Coast Office:
808 D Wiggington Rd, Lynchburg, VA 24502
Tel: 818.752.9002
Fax: 540.301.1551
E-mail: info@vitiligosupport.org
Web: www.vitiligosupport.org
Xeroderma Pigmentosum Family Support Group (XP Family Support Group)
Michele Milota, Executive Director
3006 Notre Dame Dr
Sacramento CA 95826
Phone: 916 -628-3814
Fax: 916-386-9597
Email: contact@xpfamilysupport.org
Website: www.xpfamilysupport.org
CSD Affiliates
American Skin Association, Inc.
346 Park Avenue South, 4th Floor
New York, NY 10010
Tel: 212.889.4858
Fax: 212.889.4959
E-mail: info@americanskin.org
Web: www.americanskin.org
Society for Investigative Dermatology (SID)
820 West Superior Avenue, 7th Floor
Cleveland, OH 44113-1807
Tel: 216.579.9300
Fax: 216.579.9333
Web: www.sidnet.org
American Academy of Dermatology (AAD)
PO Box 4014
Schaumberg, IL 60168-4014
Tel: 847.330.0230
Toll Free: 888.462-3376
Fax: 847.330-0050
Web: www.aad.org
Society for Pediatric Dermatology (SPD)
8365 Keystone Crossing, Suite 107
Indianapolis, IN 46240
Tel: 317.202.0224
Fax: 317.205.9481
E-mail: spd@hp-assoc.com
Web: www.pedsderm.net
Dermatology Nurses Association (DNA)
15000 Commerce Parkway, Suite C
Mt. Laurel, NJ 08054
Tel: 800.454.4362
E-mail: dna@dnanurse.org
Web: www.dnanurse.org
Coalition of Skin Diseases, 4301 Connecticut Avenue, NW, Suite 404, Washington, DC 20008-2369, (202) 243-0115
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