General Information

The Society for Investigative Dermatology
526 Superior Avenue East, Suite 540
Cleveland, OH 44114
Phone: 216-579-9300
Fax: 216-579-9333
Web Page: www.sidnet.org
Email: sid@sidnet.org

American Academy of Dermatology
930 E. Woodfield Road
P. O. Box 4014
Schaumburg, IL 60168-4014
Phone: 847-330-0230
Fax: 847-330-0050
Web page: www.aad.org

Albinism

National Foundation for Vitiligo & Pigment Disorders
9032 South Normandy Drive
Centerville, OH 45459
Phone: 513-885-5739

National Organization for Albinism and Hypopigmentation (NOAH)
1530 Locust Street, Box 29
Philadelphia, PA 19102-4415
Phone: 215-545-2322 or 800-473-2310
Email: noah@albinism.org
Web page: www.albinism.org

Alopecia Areata

National Alopecia Areata Foundation
P. O. Box 150760
San Rafael, CA 94915-0760
Phone: 415-472-3780
Fax: 415-472-5343
Email: info@naaf.org
Web page: www.naaf.org

Arthritis

Arthritis Foundation
P. O. Box 7669
Atlanta, GA 30357-0669
Phone: 404-872-7100
Info Line: 800-568-4045
Web page: www.arthritis.org

Hidradenitis Suppurativa Foundation, Inc.
7895 Via Belfiore #4
San Diego, CA 92129
Email: info@hs-foundation.org
Web page: www.hs-foundation.org

Behcet’s Syndrome

American Behcet’s Foundation, Inc.
P. O. Box 54063
Minneapolis, MN 55454-0063
Phone: 800-723-4238 or 800-7BEHCETS

Cancer

American Cancer Society
1599 Clifton Road, NE
Atlanta, GA 30329
Phone: 800-227-2345
Web page: www.cancer.org

HealthMatch - Skin Cancer/Clinical Trials
Web page: https://healthmatch.io/skin-cancer​
Contact: hello@healthmatch.io

National Cancer Institute
Public Inquiries Office
6116 Executive Blvd., Room 3036A
Bethesda, MD 20892-8322
Phone: 800-4-CANCER
Web page: www.cancer.gov

Chicken Pox/Shingles (Varicella-zoster)

VZV Research Foundation
24 E. 64th Street
New York, NY 10021
Phone: 212-371-7280
Fax: 212-838-0380
Web page: www.vzvfoundation.org

Cutaneous T-Cell Pymphoma – Mycosis Fungoides

CTCL-MF E-mail Support List
To subscribe, send email to: listserv@acor.org
In body of the message write "Subscribe CTCL-MF."
Owned/founded by:
Judy Jones - judy@grandtorch.com

Cutaneous Lymphoma Foundation
PO Box 374
Birmingham, MI 48012-0374
Phone: 248-644-9014
Fax: 248-644-9014
Email: info@clfoundation.org
Web page: www.clfoundation.org

Dermatitis Herpetiformis

American Celiac Society
PO Box 23455
New Orleans, LA 70183
Phone: 504-737-3293
info@americanceliacsociety.org

Celiac Disease Foundation
13251 Ventura Blvd., Number 1
Studio City, CA 91604-1838
Phone: 818-990-2354
Fax: 818-990-2379
Web page: www.celiac.org

Celiac Support Association
P. O. Box 31700
Omaha, NE 68131-0700
Phone: 402-558-0600 or 877-CSA-4-CSA Fax: 402-558-1347
Web page: www.csaceliacs.org

Gluten Intolerance Group (Dermatitis Herpetiformis)
15110 10th Avenue, SW, Suite A
Seattle, WA 98166
Phone: 206-246-6652
Fax: 206-246-6531
Web page: www.gluten.net

Dermatomyositis

Myositis Association
The Myositis Association
1737 King Street, Suite 600
Alexandria, VA 22314
Phone: 703-299-4850
Fax: 703-535-6752
Web page: www.myositis.org

Muscular Dystrophy Association
222 S. Riverside Plaza, Suite 1500
Chicago, IL 60606
Phone: 800-572-1717
Web page: www.mda.org

Dermatology

Dermatology Foundation 1560 Sherman Avenue
Suite 870
Evanston, IL 60201-4808
Phone: 847-328-2256
Fax: 847-328-0509
Web page: www.dermatologyfoundation.org

International Foundation for Dermatology
835 West 10th Avenue
Vancouver, BC V5Z4E8 Canada
Phone: 608-875-4747
Web page: www.ifd.org

Dermatopathology

Dermatopathology Foundation
P. O. Box 377
Canton, MA 02021
Phone: 617-821-0648
Contact: Wendy Christison

Eczema

National Eczema Society
11 Murray Street
London, NW1 9RE, United Kingdom
Phone: 020-7281-3553
Email: helpline@eczema.org
Web page: www.eczema.org

National Eczema Association
4460 Redwood Highway, Suite 16-D
San Rafael, CA 94903-1953
Phone: 415-499-3474 or 800-818-7546
Fax: 415-472-5345
Web page: www.nationaleczema.org

Ehlers Danlos Syndrome

Ehlers Danlos National Foundation
7918 Jones Branch Drive, Suite 300
McLean, VA 22102
Phone: 703-506-2892
Fax: 703-506-3266
Email: ednfstaff@ednf.org
Web page: www.ednf.org

Epidermolysis Bullosa

Dystrophic Epidermolysis Bullosa Research Association of America (D.E.B.R.A. of America, Inc.)
75 Broad Street, Suite 300
New York, NY 10004
Phone: 212-868-1573
Email: staff@debra.org
Web page: www.debra.org

Genetic Disease

Genetic Alliance
4301 Connecticut Ave., NW, Suite 404
Washington, DC 20008-2369
Phone: 202-966-5557
Email: info@geneticalliance.org
Web page: www.geneticalliance.org

Hansen’s Disease
See Leprosy

Hemochromatosis

Hemochromatosis Information Society
Phone: 214-702-2698
Email: info@hemoinfo.org
Web Page: www.hemoinfo.org

Herpes

Herpes - American Sexual Health Association
P. O. Box 13827
Research Triangle Park, NC 27709
Phone: 919-361-8400
Web page: www.ashasexualhealth.org/stdsstis/herpes/

Histiocytosis

Histiocytosis Association
332 North Broadway
Pitman, NJ 08071
Phone: 856-589-6606
Email: info@histio.org
Web page: www.histio.org

Human Papillomavirus

HPV Support Program - American Sexual Health Association
P. O. Box 13827
Research Triangle Park, NC 27709
Phone: 919-361-8400
Fax: 919-361-8425
Web page: www.ashasexualhealth.org/stdsstis/hpv/

Ichthyosis

Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST)
2616 N Broad Street
Colmar, PA 18915
Phone: 215-997-9400
Email: info@firstskinfoundation.org
Web page: www.scalyskin.org

National Registry for Ichthyosis and Related Disorders University of Washington Department of Dermatology
1959 N.E. Pacific Street, Room BB1353
Box 356524
Seattle, WA 98195
Phone: 800-595-1265
Email: info@skinregistry.com
Web page: www.skinregistry.org

Leprosy (Hansen’s Disease)

World Health Organization - Leprosy
Avenue Appia 20
1211 Geneva 27
Switzerland
Phone: 41-22-791-2111
Web page: who.int/topics/leprosy/en/

Damien Dutton Society for Leprosy Aid
616 Bedford Avenue
Bellmore, NY 11710-3619
Phone: 516-221-5829
Web page: www.damien-duttonleprosysociety.org/

Lupus Erythematosus

American Lupus Society
260 Maple Court, Suite 123
Ventura, CA 93003
Phone: 805-339-0443 or 800-331-1802 (Info Line)
Fax: 805-339-0467

Lupus Foundation of America, Inc.
2000 L Street NW, Suite 410
Washington, DC 20036
Phone: 202-349-1155
Info Line: 800-558-0121
Web page: www.lupus.org

Lymphomatoid Papulosis (and other Ki-1 positive cutaneous lymphomas)

Lymphomatoid Papulosis Central Registry Department of Pathology Beth Israel Hospital
330 Brookline Avenue
Boston, MA 02215
Phone: 627-735-5886

Melanoma

American Melanoma Foundation
4150 Regents Park Row, Suite 300
La Jolla, CA 92037
Web page: www.melanomafoundation.org

Neurofibromatosis

Children's Tumor Foundation - Ending NF Through Research
120 Wall Street, 16th Floor
New York, NY 10005
Phone: 212 344-6633 or 800 323-7938
E-mail: info@ctf.org
Web page: http://www.ctf.org/

Ostomy

United Ostomy Association of America, Inc.
PO Box 512
Northfield, MN 55057
Phone: 800-826-0826
Web page: www.uoa.org

Patient Advocates

National Patient Advocate Foundation
725 15th Street North West, 10th Floor
Washington, DC 20005
Phone: 202-347-8009
Web page: http://www.npaf.org/

Pemphigus and Pemphigoid

The Pemphigus and Pemphigoid Foundation
1331 Garden Highway, Suite 100
Sacramento, CA 95833
Phone: 916-922-1298
Email: info@pemphigus.org
Web page: www.pemphigus.org/

Porphyria

The American Porphyria Foundation
4900 Woodway, Suite 780
Huston, TX 77056
Phone: 866-AFP-3635
Web page: www.porphyriafoundation.com

Pseudoxanthoma Elasticum (PXE)

PXE International, Inc.
4301 Connecticut Avenue, NW, Suite 404
Washington, D.C. 20008-2369
Phone: 202.362.9599
Web page: www.pxe.org

Psoriasis

National Psoriasis Foundation
6600 S.W. 92nd, Suite 300
Portland, OR 97223
Phone: 503-244-7404 or 800-723-9166
Fax: 503-245-0626
Email: getinfo@psoriasis.org
Web page: www.psoriasis.org

Rare Disorders

NIH - Office of Rare Diseases National Institutes of Health
PO Box 8126
Gaithersburg, MD 20898
Phone: 888-205-2311
Fax: 301-480-9655
Web page: www.rarediseases.info.nih.gov

National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
Danbury, CT 06813-1968
Phone: 203-744-0100
Fax: 203-798-2291
Web page: www.rarediseases.org

Rosacea

National Rosacea Society
196 James Street
Phone: 888-NO-BLUSH
Email: rosaceas@aol.com
Web page: www.rosacea.org

Sarcoidosis

Foundation for Sarcoidosis Research
1820 W. Webster Ave, Suite 304
Chicago, IL 60614
Phone: 312-341-0500 or 866-358-5477
Web page: www.stopsarcoidosis.org/

Scleroderma

Scleroderma Foundation
300 Rosewood Drive, Suite 105
Danvers, MA 01923
Phone: 978-463-5843 or 800-722-HOPE
Fax: 978-463-5809
Email: sfinfo@scleroderma.org
Web page: www.scleroderma.org

Scleroderma Research Foundation
220 Montgomery Street, Suite 1411
San Francisco, CA 94104
Phone: 800-441-2873
Web page: www.srfcure.org

Scleroderma Society
Bride House
10-20 Bride Lane
London, Ec4Y 8EE, United Kingdom
Phone: 020-7000-1925
Email: info@sclerodermascoiety.co.uk
Web page: http://sclerodermauk.org/

Self Help

National Self-Help Clearinghouse
Graduate School and University Center of the City University of New York
365 5th Avenue, Suite 3300
New York, NY 10016
Web page: www.selfhelpweb.org

Sjogren’s Syndrome

Sjögren's Syndrome Foundation
6707 Democracy Boulevard, Suite 325
Bethesda, MD 20817
Phone: 301-530-4420
Web Page: www.sjogrens.org

Skin Research & Education for ALL Skin Disorders

American Skin Association
6 East 43rd Street, 28th Floor
New York, NY 10017
Phone: 212-889-4858 or 800-499-SKIN
Fax: 212-889-4959
Web page: www.americanskin.org

Dermatology Foundation
1560 Sherman Avenue, Suite 870
Evanston, IL 60201-4808
Phone: 847-328-2256
Fax: 847-328-0509
Email: dfgen@dermatologyfoundation.org
Web page: www.dermatologyfoundation.org

Skin Cancer
Also see Melanoma

Skin Cancer Foundation
149 Madison Avenue, Suite 901
New York, NY 10016
Phone: 212-725-5176
Fax: 212-725-5751
Web page: www.skincancer.org

Vitiligo

National Vitiligo Foundation, Inc
11250 Cornell Park Drive, Suite 207
Cincinnati, OH 45242
Phone: 513-793-6834
Web page: www.mynvfi.org

National Organization for Albinism & Hypopigmentation (NOAH)
11250 Cornell Park Drive, Suite 207
Cincinnati, OH
Phone: 603-887-2310 or 800-473-2310
Web page: www.albinism.org

Vitiligo Support International
P.O. Box 3565
Lynchburg, VA 24503
Phone: 434-326-5380
Web page: www.vitiligosupport.org