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Patient Support Groups

Resources by Group

​Academic Journals

Journal of the American Academy of Dermatology
www.eblue.org   

Journal of Investigative Dermatology
www.nature.com/jid/index.html

Archives of Dermatology
http://archderm.ama-assn.org  

PubMed – U.S. National Library of Medicine
www.ncbi.nlm.nih.gov/pubmed

General Information

The Society for Investigative Dermatology 
526 Superior Avenue East, Suite 540
Cleveland, OH 44114
Phone: 216-579-9300
Fax: 216-579-9333
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
www.aad.org

American Contact Dermatitis Society
2323 North State Street, #30
Bunnell, FL 32110
Phone: (386) 437-4405
Fax: (386) 437-4427
Email: info@contactderm.org
www.contactderm.org

Society for Pediatric Dermatology
8365 Keystone Crossing, Suite 107
Indianapolis, IN 46240
Phone: (317) 202-0224
Fax: (317) 205-9841
Email: spd@hp-assoc.com
www.pedsderm.net

Women’s Dermatologic Society
575 Market Street, Suite 2125
San Francisco, CA 94105
Phone: (877) WDS-ROSE
Email: wds@womensderm.org
www.womensderm.org

Patient Support Groups 

Albinism
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 
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
www.naaf.org 

Arthritis
Arthritis Foundation

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

Cancer
National Cancer Institute

Public Inquiries Office
6116 Executive Blvd., Room 3036A
Bethesda, MD 20892-8322
Phone: 800-4-CANCER
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
www.vzvfoundation.org

Cutaneous T-Cell Lymphoma – 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
www.clfoundation.org  

Dermatitis Herpetiformis

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

Muscular Dystrophy Association
3300 E. Sunrise Drive
Tucson, AZ 85718
Phone: 800-572-1717
Fax: 601-529-5300
www.mdausa.org

Dermatology

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

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
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
www.ashastd.org

Ichthyosis

Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST)
1364 Welsh Road G2
North Wales, PA 19454
Phone: 215-619-0670
Fax: 215-619-0780
Email: info@scalyskin.org 
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 
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 
www.who.int

Melanoma

American Melanoma Foundation
4150 Regents Park Row, Suite 300
La Jolla, CA 92037
Phone: 858-882-7712
Fax: 619-448-2902
www.melanomafoundation.org

Neurofibromatosis

Children’s Tumor Foundation
95 Pine Street, 16th Floor 
New York, NY 10005 
Phone: 212-344-6633
Fax: 212 747-0004 
E-mail: info@ctf.org 
www.ctf.org

Ostomy 

United Ostomy Association, Inc.
P.O. Box 66
Fairview, TN 37062-0066
Phone: 949-660-8624 or
800-826-0826
www.uoa.org

Pemphigus and Pemphigoid

The International Pemphigus Foundation
2701 Cottage Way #16
Sacramento, California 95825
Phone: 916-922-1298
Fax: 916-922-1458
email: pemphigus@pemphigus.org
www.pemphigus.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 
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 
www.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 
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
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 
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 
www.rarediseases.org

Rosacea

National Rosacea Society
196 James Street
Barrington, IL 60010
Phone: 800-NO-BLUSH
Email: rosaceas@aol.com 
www.rosacea.org

Scleroderma

Scleroderma Federation, Inc.
Peabody Office Building 

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

Scleroderma Research Foundation
220 Montgomery Street, Suite 1411
San Francisco, CA 94104
Phone: 415-834-9444
Fax: 415-834-9177
www.srfcure.org

Sjögren’s Syndrome

Sjögren's Syndrome Foundation
6707 Democracy Blvd., Suite 325
Bethesda, MD 20817
Phone: 800-475-6473
Fax: 301-530-4415
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
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 
www.dermatologyfoundation.org

Skin Cancer


National Council on Skin Cancer prevention   
13203 Larson Court
Mount Airy, MD 21771 
www.skincancerprevention.org  

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

Vitiligo

National Organization for Albinism & Hypopigmentation (NOAH)
P.O. Box 959
East Hampstead, NH 03826-0959
Phone: 800-473-2310
www.albinism.org

National Vitiligo Foundation
P.O. Box 23226
Cincinnati, OH 45223
Phone: 513-541-3903
Email: info@nvfi.org
http://nvfi.org

Government Organizations

National Institutes of Health
9000 Rockville Pike
Phone: (301) 496-4000
Email: nihinfo@od.nih.gov 
Bethesda, MD 20892
www.nih.gov  

Centers for Disease Control and Prevention
1600 Clifton Road
Atlanta, GA 30333
Phone: (888) 232-6348
Email: cddinfo@cdc.gov
www.cdc.gov

Centers for Medicare and Medicaid Services
7500 Security Boulevard
Baltimore, MD 21244
www.cms.hhs.gov

Academic Journals
General Info
Patient Support Groups
Chicken Pox
Cutaneous T-Cell Lymphoma – Mycosis Fungoides 
Dermatitis Herpetiformis
Dermatomyositis
Dermatology
Ehlers Danlos Syndrome
Epidermolysis Bullosa
Genetic Disease
Human Papillomavirus
Ichthyosis
National Registry for Ichthyosis and Related Disorders
Leprosy (Hansen’s Disease) 
Melanoma
Neurofibromatosis
Ostomy 
Pemphigus and Pemphigoid
Porphyria
Pseudoxanthoma Elasticum (PXE)
Psoriasis
Rare Disorders
Rosacea
Scleroderma
Sjögren’s Syndrome
Skin Research & Education for ALL Skin Disorders
Skin Cancer
Vitiligo
Government Organizations
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