General Information

The Society for Investigative Dermatology
820 West Superior, 7th Floor
Cleveland, OH 44113
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
 

Patient Support Groups

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:   http://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

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@mffoundation.org

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 Sprue Association/USA
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

Gluter 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 of America
1233 20th Street, NW, Suite 402
Washington, DC 20036
Phone: 202-887-0088
Fax: 202-466-8940
Web page: www.myositis.org

Muscular Dystrophy Association
3300 E. Sunrise Drive
Tucson, AZ 85718
Phone: 800-572-1717
Fax: 601-529-5300
Web page: www.mdausa.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
Hill House, Highgate Hill
London, N19 5NA, United Kingdom
Phone: 020-7281-3553
Fax: 020-7281-6395
Email: helpline@eczema.org
Web page: www.eczema.org

National Eczema Association for Science and Education
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
3200 Wilshire Blvd., Suite 1601, South Tower
Los Angeles, CA 90010
Phone: 213-368-3800
Fax: 213-427-0057
Web page: www.ednf.org
 

Epidermolysis Bullosa

Dystrophic Epidermolysis Bullosa
Research Association of America
(D.E.B.R.A. of America, Inc.)
5 West 36th Street, Suite 404
New York, NY 10018
Phone: 212-868-1573
Email: staff@debra.org
Web page: www.debra.org
 

Genetic Disease

The Alliance of Genetics Support Groups
4301 Connecticut Ave., NW, Suite 404
Washington, DC 20008-2369
Phone: 202-966-5557
Fax: 202-966-8553
Email: info@geneticalliance.org
Web page: www.geneticalliance.org

Hansen’s Disease
See Leprosy
 

Hemochromatosis

Hemochromatosis Research Foundation
P. O. Box 8569
Albany, NY 12208
Phone: 518-489-0972
Fax: 518-489-0227
 

Herpes

Herpes Resource Center
American Social Health Association
P. O. Box 13827
Research Triangle Park, NC 27709
Phone: 919-361-8488 or
800-230-6039
Web page: www.ashastd.org
 

Histiocytosis

Histiocytosis Association of America, Inc.
332 North Broadway
Pitman, NJ 08071
Phone: 856-589-6606 or
800-548-2758 (US and Canada only)
Email: jmt4histio@aol.com
Web page: www.histio.org
 

Human Papillomavirus

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

Ichthyosis

Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST)
1601 Valley Forge Road
Landsdale, PA 19446
Phone: 215-631-1411
Fax: 215-631-1413
Email: info@scalyskin.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)

Communications Unit
Special Programme for Research and Training in Tropical Disease (TDR)
World Health Organization
1211 Geneva 27
Switzerland
Phone: 41-22-791-3725
Fax: 41-22-791-4854
Email: tdr@who.int
Web page: www.who.int

Damien Dutton Society for Leprosy Aid
616 Bedford Avenue
Bellmore, NY 11710-3619
Phone: 516-221-5829

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 710
Washington, DC 20036
Phone: 202-349-1155 or
800-558-0121
Fax: 202-349-1156
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
2160 Fletcher Parkway, Suite O
El Cajon, CA 92020
Phone: 619-448-0991
Fax: 619-448-2902
Email: sunsmartz@melanomafoundation.org
Web page: www.melanomafoundation.org
 

Neurofibromatosis

National Neurofibromatosis Foundation
95 Pine Street, 16th Floor
New York, NY 10005
Phone: 212 344-6633 or
800 323-7938
Fax: 212 747-0004
E-mail: nnff@nf.org
Web page: www.nf.org  or www.neurofibromatosis.org
 

Ostomy

United Ostomy Association, Inc.
19772 MacArthur Blvd., #200
Irvine, CA 92612-2405
Phone: 949-660-8624 or
800-826-0826
Fax: 949-660-9262
Email: info@uoa.org
Web page: www.uoa.org

Patient Advocates
Coalition of Patient Advocates
6600 S.W. 92nd Avenue, Suite 300
Portland, OR 97223
Phone: 503-244-7404
Fax: 503-245-0626
 

Pemphigus and Pemphigoid

The International Pemphigus Foundation
1540 River Park Drive, Suite 208
Sacramento, California 95815
United States of America
Phone: 916 922-1298
Fax: 510 527-8497
email: pemphigus@pemphigus.org

The Pemphigus and Pemphigoid Society
15934 Hesperian Blvd., #122
San Lorenzo, CA 94580
Phone: 510-755-4266
Email: pps@1clever.org
Web page: www.1clever.org
 

Porphyria

The American Porphyria Foundation
P. O. Box 22712
Houston, TX 77227
Phone: 713-266-9617
Fax: 713-840-9552
Email: porphyrus@aol.com
Web page: www.porphyriafoundation.com
 

Pseudoxanthoma Elasticum (PXE)

National Association for Pseudoxanthoma Elasticum, Inc. (NAPE)
8764 Manchester Road, Suite 200
St. Louis, MO 63144-2724
Phone: 314-962-0100
Fax: 314-962-0100
Email: pxenape@napxe.org
Web page: pxenape.org

PXE International, Inc.
4301 Connecticut Avenue, NW, Suite 404
Washington, D.C. 20008-2369
Phone: 202.362.9599
Fax: 202.966.8553
Email: info@pxe.org
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
Web page: www.psoriasis.org
 

Rare Disorders

Office of Rare Diseases
National Institutes of Health
6100 Executive Boulevard
Room 3B01, MSC 7518
Bethesda, Maryland 20892-7518
Phone: 301-402-4336
Fax: 301-480-9655
Email: ord@od.nih.gov
Web page: www.rarediseases.info.nih.gov

National Organization for Rare Disorders
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Phone: 203-744-0100 or
800-999-6673 (voicemail only)
TDD Number: 203-797-9590
Fax: 203-798-2291
Email: orphan@rarediseases.org
Web page: www.rarediseases.org
 

Rosacea

National Rosacea Society
800 South Northwest Highway, Suite 200
Barrington, IL 60010
Phone: 800-NO-BLUSH
Email: rosaceas@aol.com
Web page: www.rosacea.org

Sarcoidosis

Sarcoidosis Family Aid & Medical Research Foundation
460 Central Avenue
East Orange, NJ 07018
Contact: Geneva Ausley, President & Founder
Phone: 201-399-3644 or
800-203-6429
 

Scleroderma

Scleroderma Federation, Inc.
Peabody Office Building
89 Newbury Street, Suite 201
Danvers, MA 01923
Phone: 978-750-4499 or
800-722-HOPE
Fax: 978-750-9902
Email: sfinfo@scleroderma.org
Web page: www.scleroderma.org

Scleroderma Research Foundation
2320 Bath Street, Suite 307
Santa Barbara, CA 93105
Phone: 805-563-9133
Fax: 805-563-2402
Web page: www.srfcure.org

Scleroderma Society
1725 York Avenue, Suite 29-F
New York, NY 10128
Phone: 212-427-7040

United Scleroderma Foundation
(now merged with Scleroderma Federation)
Peabody Office Building
89 Newbury Street, Suite 201
Danvers, MA 01923
Phone: 978-750-4499 or
800-722-HOPE
Fax: 978-750-9902
Email: sfinfo@scleroderma.org
Web page: www.scleroderma.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

National Sjögren's Syndrome Association
P.O. Box 22066
Beachwood, OH 44122
Phone: 216-292-3866 or
800-395-NSSA
Fax: 216-292-4955
E-mail: NickofOhio@aol.com
Web page: www.sjogrenssyndrome.org

Sjögren's Syndrome Foundation
8120 Woodmont Ave., Suite 530
Bethesda, MD 20814
Phone: 301-718-0300
Fax: 301-718-0322
Web Page: www.sjogrens.org
 

Skin Research & Education for ALL Skin Disorders

American Skin Association
346 Park Avenue South, 4th Floor
New York, NY 10010
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
245 Fifth Avenue, Suite 1403
New York, NY 10016
Phone: 800-SKIN-490
Fax: 212-725-5751
Email: info@skincancer.org
Web page: www.skincancer.org
 

Vitiligo

Frontier’s International Vitiligo Foundation
4 Rozina Court
Owings Mills, MD 21117

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

National Organization for Albinism & 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

National Vitiligo Foundation, Inc.
700 Olympic Plaza Circle, Suite 404
Tyler, TX 75701
Phone: 903-595-3713
Fax: 903-593-1545
Email: info@nvfi.org
Web page: www.vitiligofoundation.org

Vitiligo Support International

P.O. Box 4008

Valley Village, CA 91617-0008
Phone:  818-752-9002

Fax:  818-337-7268

info@vitiligosupport.org

www.vitiligosupport.org