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Patient Education and Information Sources
Kaiser Health Education
Classes and information available
Located at Kaiser Santa Rosa, MOB West, 1st Floor
(707) 571-4167
American Academy of Dermatology
A fantastic web site offering patient education, information on patient support groups, skin cancer information, a KIDS connection, and more.
Many links are available on the site www.aad.org
Patient Support Groups
AMERICAN PORPHYRIA FOUNDATION
American Porphyria Foundation
P.O. Box 22712, Houston, TX 77227
Phone: (713) 266-9617
INFLAMMATORY SKIN DISEASE INSTITUTE
Inflammatory Skin Disorders
P.O. Box 1074
Newport News, VA 23601
Phone: (800) 484-6800 ext. 6321
Fax: (757) 595-1842
Email: ExDirlSDI@aol.com
INTERNATIONAL PEMPHIGUS FOUNDATION
Pemphigus
828 San Pablo Ave., Suite 203
Albany, CA 94709
Phone: (510) 527-4970
Email: PVnews@aol.com
Web-site: www.pemphigus.org
LUPUS FOUNDATION OF AMERICA, INC.
Lupus
1300 Piccard Drive, Suite 200
Rockville, MD 20850
Phone: (301) 670-9292
(800) 558-0121
Fax: (301) 670-9486
Email: info@lupus.org
Web-site: www.lupus.org
MYCOSIS FUNGOIDES FOUNDATION
Mycosis Fungoides
P.O. Box 374
Birmingham, MI 48102
Phone: (248) 644-9014
Fax: (248) 644-9014
Email: Judy@MFFoundation.org
Web-site: www.mffoundation.org
NATIONAL ALOPECIA AREATA FOUNDATION
Alopecia Areata
14 Mitchell Boulevard
San Rafael, CA 94903
Phone: (415) 472-3780
Fax: (415) 472-5343
Email: info@naaf.org
Web-site: www.naaf.org
NATIONAL ECZEMA ASSOCIATION
Eczema
6600 SW 92nd AVE #230
Portland, OR 97223
Phone: (503) 228-4430
(800) 818-7546
Fax: (503) 224-3363
Email: info@nationalaleczema.org
Web-site: www.nationaleczema.org
NATIONAL FOUNDATION FOR ECTODERMAL DYSPLASIAS
Ectodermal Dysplasias
410 E. Main Street
Mascoutah, IL 62258
Phone: (618) 566-2020
Fax: (618) 566-4718
Email: info@nfed.org
Web-site: www.nfed.org
NATIONAL MARFAN FOUNDATION
Marfan Syndrome
382 Main Street
Port Washington, NY 11050
Phone: (516) 883-8712
(800) 862-7326
Fax: (516) 883-8040
Email: staff@marfan.org
Web-site: www.marfan.org
NATIONAL PSORIASIS FOUNDATION
Psoriasis
6600 SW 92nd, Suite 300
Portland, OR 97223
Phone: (503) 244-7404
(800) 723-9166
Fax: (503) 245-0626
Email: Getinfo@npfusa.org
Web-site: www.psoriasis.org
NATIONAL VITILIGO FOUNDATION
Vitiligo
611 South Fleishel Avenue
Tyler, TX 75701
Phone: (903) 531-5469
Fax: (903) 531-1234
Email: vitiligo@trimofran.org
Web-site: www.vitiligofoundation.org
NEVUS OUTREACH, INC.
Nevus
1601 Madison Blvd
Bartlesville, OK 74006
Phone: (918) 331-0595
(877) 426-3887 Outreach
Fax: (918) 331-0595
Email: info@nevus.org
Web-site: www.nevus.org
PFB PROJECT (PSEUDOFOLLICULITIS BARBAE)
1875 Connecticut Ave., Suite 1140, Washington D.C. 20009-5728
Phone: (202) 588-5300
PXE INTERNATIONAL, INC.
Pseudoxanthoma Elasticum
23 Mountain Street
Sharon, MA 02067
Phone: (781) 784-3817
Fax: (781) 784-6672
Email: info@pxe.org
Web-site: www.pxe.org
SCLERODERMA FOUNDATION
Scleroderma
12 Kent Way, Suite 101
Byfiled, MA 01922
Phone: (978) 463-5843
Fax: (978) 463-5809
Email: sfinfo@scleroderma.org
Web-site: www.scleroderma.org
SCLERODERMA RESEARCH FOUNDATION
Scleroderma
2320 Bath Street, Suite 315
Santa Barbara, CA 93105
Phone: (805) 563-9133
(800) 441-2873
Fax: (805) 563-2402
Email: charles_spaulding@srfcure.org
Web-site: www.srfcure.org
SJOGREN'S SYNDROME FOUNDATION
Sjogren's Syndrome
8120 Woodmont Avenue, Suite 530
Bethesda, MD 20814
Phone: (301) 718-0300
Fax: (301) 718-0322
Email: ssf@sjogrens.org
Web-site: www.sjogrens.org
STURGE-WEBER FOUNDATION
Sturge-Weber
P.O. Box 418
Mt. Freedom, NJ 07970
Phone: (973) 895-4445
(800) 627-5482
Fax: (973) 895-4846
Email: swfoffice@aol.com
Web-site: www.sturge-weber.com
THE MASTOCYTOSIS SOCIETY
11208 Vienna Dr., Denton, MD 21629
TUBEROUS SCLEROSIS ALLIANCE
Tuberous Sclerosis
801 Roeder Road, Suite 750
Silver Spring, MD 20910
Phone: (301) 562-9890
(800) 225-6872
Fax: (301) 562-9870
Email: info@tsalliance.org
Web-site: www.tsalliance.org
XERODERMA PIGMENTOSUM SOCIETY
Xeroderma Pigmentosum
P.O. Box 4759
Poughkeepsie, NY 12602
Phone: (518) 851-2612
Fax (518) 851-2612
Email: xps@xps.org
Web-site: www.xps.org
NATIONAL NEUROFIBROMATOSIS FOUNDATION
95 Pine Str., 16th Fl., New York, NY 10005
Phone: (800) 323-7938
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