Patient Support Groups
Resources by Group
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​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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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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
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Ostomy
United Ostomy Association, Inc.
P.O. Box 66
Fairview, TN 37062-0066
Phone: 949-660-8624 or
800-826-0826
www.uoa.org
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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
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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
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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 ​
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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
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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
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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
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Rosacea
National Rosacea Society
196 James Street
Barrington, IL 60010
Phone: 800-NO-BLUSH
Email: rosaceas@aol.com
www.rosacea.org
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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
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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
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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
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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
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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
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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