American Skin Association, Inc.
150 East 58th Street, 33rd Floor
New York, NY 10155-0002
Phone: 212-753-8260
Fax: 212-688-6547
Email: info@skinassn.org
Ms. Joyce Weidler

Dermatitis Herpetiformis
Gluten Intolerance Group of North America
15110 10th Avenue, SW, Suite A
Seattle, WA 98166
Phone: 206-246-6652
Fax: 206-246-6531
Email: gig@accessone.com
Website: gluten.net
Ms. Cynthia Kupper

Ehlers Danlos National Foundation
6399 Wilshire Boulevard, Suite 510
Los Angeles, CA 90048
Phone: 323-651-3038
Fax: 323-651-1366
Email: staff@ednf.org
Website: ednf.org
Ms. Linda Neumann-Potash

Epidermolysis Bullosa Research Association of America (D.E.B.R.A.)
40 Rector Street, 14th Floor
New York, NY 10006
Phone: 212-513-4090
Fax: 212-513-4099
Email: staff@debra.org
Website: debra.org
Ms. Miriam Feder, Executive Director

Foundation for Ichthyosis and Related Skin Types (F.I.R.S.T)
650 N. Cannon Avenue, Suite 17
Lansdale, PA 19446
Phone: 800-545-3286 / 215-631-1411
Fax: 215-631-1413
Email: info@scalyskin.org
Website: scalyskin.org
Ms. Jean Pickford, Executive Director

Lupus Foundation of America, Inc.
1300 Piccard Drive, Suite 200
Rockville, MD 20850-4303
Phone: 301-670-9292 / 800-558-0121
Fax: 301-670-9486
Email: lupusinfo@lupus.org
Website: lupus.org
Ms. Deb Blom, Interim Exec Director
Mr. Duane Peters, Dir of Comms & Advocacy

National Alopecia Areata Foundation
710 C Street, Suite 11
San Rafael, CA 94901
Phone: 415-456-4644
Fax: 415-456-4274
Email: info@naaf.org
Website: alopeciaareata.com
Ms. Vicki Kalabokes, Exec Director

National Association for Pseudoxanthoma Elasticum
3500 East 12th Avenue
Denver, CO 80206
Phone: 303-355-3866
Fax: 303-355-3859
Email: xenape@napxe.org
Website: pxenape.org
Mr. Al Ferrari, President

National Eczema Association for Science and Education (N.E.A.S.E)
1220 SW Morrison Street, Suite 433
Portland, OR 97205
Phone: 503-228-4430 / 800-818-7546
Fax: 503-224-3363
Email: info@nationaleczema.org
Website: nationaleczema.org
Robert O. McAlister, Ph.D., Exec Dir

National Foundation for Ectodermal Dysplasias
219 E. Main Street
PO Box 114
Mascoutah, IL 62258-0114
Phone: 618-566-2020
Fax: 618-566-4718
Email: info@nfed.org
Website: nfed.org
Ms. Mary Kaye Richter, Exec Director

National Marfan Foundation
382 Main Street
Port Washington, NY 11050
Phone: 516-883-8712 / 800-862-7326
Fax: 516-883-8040
Email: staff@marfan.org
Website: www.marfan.org
Ms. Carolyn Levering, Exec Director

National Pemphigus Foundation
P.O. Box 9606
Berkeley, CA 94709-0606
Phone: 510-527-4970
Fax: 510-527-8497
Email: pemphigus@pemphigus.org
Website: pemphigus.org
Ms. Janet Segall

National Psoriasis Foundation
6600 SW 92nd, Suite 300
Portland, OR 97223-7915
Phone: 503-244-7404 or 800-723-9166
Fax: 503-245-0626
Email: getinfo@psoriasis.org
Website: psoriasis.org
Ms. Gail Zimmerman, Executive Director

National Tuberous Sclerosis Association
8181 Professional Place, Suite 110
Landover, MD 20785
Phone: 800-225-6872
301-459-9888
Fax: 301-459-0394
Info Request: tsalliance.org/requestinfo.asp
Website: tsalliance.org
Vicky Whittemore

National Vitiligo Foundation
611 South Fleishel Avenue
Tyler, TX 75701
Phone: 903-531-5469
Fax: 903-531-1234
E-mail: vitiligo@vitiligofoundation.org
Website: vitiligofoundation.org
Shannon Ruesewald, Executive Director

National Vulvodynia Association
P.O. Box 4491
Silver Spring, MD 20914-4491
Phone: 301-299-0775
Fax: 301-299-3999
Contact: Contact NVA
Website: nva.org
Ms. Phyllis Mate, Executive Director

Nevus Outreach, Inc.
1616 Alpha Street
Lansing, MI 48910
Phone: 877-426-3887 / 517-487-2306
Fax: 515-684-0953
Contact: Contact Nevus
Website: nevus.org
Mr. Kevin Williams, President

PXE International, Inc.
(Pseudoxanthoma Elasticum)
23 Mountain Street
Sharon, MA 02067
Phone: 781-784-3817
Fax: 781-784-6672
Email: info@pxe.org
Website: pxe.org
Ms. Sharon Terry, President

Scleroderma Foundation
89 Newbury Street
Suite 201
Danvers, MA 01923-1075
Phone: 978-750-4499 / 800-422-1113
Helpline: 800-722-HOPE
Fax: 978-750-9902
Email: sfinfo@scleroderma.org
Website: scleroderma.org
Mr. Karl Kastorf, Executive Director

Scleroderma Research Foundation
Pueblo Medical Commons
2320 Bath Street, Suite 307
Santa Barbara, CA 93105
Phone: 805-563-1164
Fax: 805-563-2402
Contact: Contact
Website: srfcure.org
Ms. Sharon Monsky

Sjogren's Syndrome Foundation
333 N. Broadway, Suite 2000
Jericho, NY 11753
Phone: 516-933-6365
Fax: 516-933-6368
Contact: Contact
Website: sjogrens.com
Ms. Alexis Stegemann, Executive Director

Sturge-Weber Foundation
P.O. Box 418
Mt. Freedom, NJ 07970
Phone: 973-895-4445 / 800-441-2873
Fax: 973-895-4846
Email: swf@sturge-weber.com
Website: sturge-weber.com
Ms. Karen Ball, Executive Director

Xeroderma Pigmentosum Society
P.O. Box 4759
Poughkeepsie, NY 12602
914-473-4735 (Phone and Fax)
E-mail: xps@xps.org
Website: www.xps.org
Caren Maha