Dept. of Dermatology - University of Iowa College of Medicine
 Dermatology Patient Support Groups
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Search database using your browser Find or Search command. Started by the Dermatology Nurses' Association in May, 1994, the list is maintained by the Dept. of Dermatology, University of Iowa.
Disorders / organizations not listed may be under the Rare Disorders resources, the searchable Online Directory of Genetic Resources of the Genetic Alliance (formerly The Alliance of Genetic Support Groups), or in the Library of The Family Village.
The Dept. of Dermatology and University of Iowa make no recommendation or endorsement of organizations listed. They are provided solely as a public service. Individuals must determine for themselves how to use the information provided. When making medical decisions, a physician should be consulted.
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General Information
- American Academy of Dermatology
930 E Woodfield Rd
Schaumburg, Illinois 60173-4729
Phone: 847-330-0230
FAX: 847-330-0050
WWW: http://www.aad.org/
Patient Support Groups
- AIDS
- WWW AIDS Information from Yahoo.
- AIDS Hotline
Tel: 800-243-AIDS (Illinois Only)
- American Foundation for AIDS Research
733 3rd Ave
12th Floor
New York, NY 10017
Tel: 212-682-7440
FAX: 212-682-9812
- Center for Disease Control
National AIDS Information Clearinghouse
Tel: 800-458-5231
- Gay Men's Health Crisis
129 West 20th St
New York, NY 10011
Tel: 212-807-6655
- HIV Testing & Counseling - STD Clinic
Howard Brown Memorial Clinic
945 West George
Chicago, IL 60657
Contact: Social Services Dept
Tel: 312-871-5777
- National S.T.D. Hotline
Tel: 800-227-8922
- National HIV / AIDS Hotline
Centers for Disease Control
English: 800-342-AIDS
Spanish: 800-344-7432
- Pediatric AIDS Foundation
1311 Colorado Ave
Santa Monica, CA 90404
Tel: 310-395-9051
FAX: 310-395-5149
- San Francisco AIDS Foundation
P.O. Box 6182
San Francisco, CA 94101-6182
Contact: Pat Christen, Director
In CA: AIDS Hotline; Tel: 415-863-AIDS or
800-367-2437 (North CA only)
- Albinism
- National Foundation for Vitiligo & Pigment Disorders
9032 South Normandy Dr
Centerville, OH 45459
Tel: 513-885-5739
- National Organization for Albinism and Hypopigmentation (NOAH)
1530 Locust St
Box 29
Philadelphia, PA 19102-4415
Tel: 215-545-2322
Tel: 800-473-2310 Answered 24 hrs
WWW: NOAH
- Alopecia Areata
National Alopecia Areata Foundation
710 "C" Street, Suite 11
P.O. Box 150760
San Rafael, CA 94915-0760
Contact: Vicki Kalabokes
Tel: 415-456-4644
Fax: 415-456-4274
WWW: NAAF
- Anemia
- Fanconi's Anemia International Registry
c/o Arleen Auerbach, PhD
Laboratory for Investigative Dermatology
The Rockefeller University
1230 York Ave
New York, NY 10021-6399
Tel: 212-327-8862
- Arthritis (Rheumatoid)
Arthritis Foundation
P.O. Box 1900
Atlanta, GA 30326
Tel: 404-872-7100
Tel: Info Line 800-283-7800
WWW: Arthritis Foundation
- Ataxia
-
National Ataxia Foundation
2600 Fernbrook Lane, Suite 119
Minneapolis, MN 55447
Contact: Donna Gruetzmacher
Tel: 763-553-0020
FAX:763-553-0167
WWW: National Ataxia Foundation
- Ataxia-Telangiectasia Children's Project
398 W. Camino Gardens Blvd, #104
Boca Raton, FL 33432
Contact person: Brad Margus
Tel: 407-395-2621
Tel: 800-543-5728
(800-5-HELP-A-T) Mon-Fri, 8:30-5:30
FAX: 407-395-2640
WWW: http://www.med.jhu.edu/ataxia/
- Behcet's Syndrome
- American Behcet's Foundation, Inc.
P.O. Box 54063
Minneapolis, MN 55454-0063
Tel: 800-723-4238
Tel: 800-7BEHCETS
WWW: American Behcet's Association
- Bloom's Syndrome
- Bloom's Syndrome Registry
c/o Laboratory of Human Genetics
The New York Blood Center
310 East 67th St
New York, NY 10021
Contact: James L. German, III, MD
Tel: 212-570-3075
FAX: 212-570-3195
- Cancer
American Cancer Society
1599 Clifton Rd, NE
Atlanta, GA 30329
Tel: 800-227-2345
Tel: 404-320-3333
FAX: 404-325-2217
WWW: American Cancer Society
National Cancer Institute
Office of Communications
National Institute for Health
9000 Rockville Pike
Bldg 31, Room 10A31
Bethesda, MD 20892
Contact: Paul Van Nevel
Tel: 301-496-6631
Tel: 800-4-CANCER
FAX: 301-402-4945
WWW: National Cancer Institute
- Chicken Pox / Shingles (Varicella - zoster)
- VZV Research Foundation
36 East 72nd St
New York, NY 10021
Tel: 212-472-3181
- Cornelia de Lange Syndrome
- Cornelia de Lange Syndrome Foundation, Inc
60 Dyer Ave
Collinsville, CT 06022-1273
Tel: 203-693-0159
Tel: 800-223-8355 M-F, 9-5
FAX: 203-693-6819
- Cutaneous T-Cell Lymphoma - Mycosis Fungoides
- Dermatitis Herpetiformis
- American Celiac Society
58 Musano Ct
West Orange, NJ 07052
Tel: 201-325-8837
- Celiac Disease Foundation
13251 Ventura Blvd, Number 3
Studio City, CA 91604-1838
Tel: 402-558-0600
- Celiac Sprue Association/USA
P.O. Box 31700
Omaha, NE 68131
Contact person: Leon H. Rothmann
Tel: 402-558-0600
FAX: 402-558-1347
- Gluten Intolerance Group (Dermatitis Herpetiformis)
15110 10 Ave SW, Suite A
Seattle, WA 98166-1820
Contact: Cynthia Kupper, CRD
Tel: 206-246-6652
Fax: 206-246-6531
WWW: www.gluten.net
- Dermatomyositis
- Myositis Association of America
755 Cantrell Ave, Suite C
Harrisonburg, VA 22801
Tel: (540) 433-7686
FAX: (540) 432-0206
WWW: MAA
- Muscular Dystrophy Association
3300 E. Sunrise Dr
Tucson, AZ 85718-3208
Tel: 602-529-2000
Fax: 601-529-5300
- Dermatology
- Dermatology Foundation
1560 Sherman Ave
Suite 302
Evanston, IL 60201-4802
Contact: Sandra Rahn Goldman
Tel: 708-328-2256
- International Foundation for Dermatology
855 West 10th
Vancouver, BC V5Z1L7 CANADA
Contact: Stuart Martin
Tel: 604-874-6112
- Dermatopathology
- Dermatopathology Foundation
P.O. Box 377
Canton, MA 02021
Contact: Wendy Christison
Tel: 617-821-0648
- Dysautonomia
- Dysautonomia Foundation, Inc.
633 Third Ave - 12th Floor
New York, NY 10017
Tel: 212-949-6644
FAX: 212-682-7625
WWW: Dysautonomia Foundation
- Ectodermal Dysplasia
- National Foundation for Ectodermal Dysplasia
219 East Main St
Box 114
Mascoutah, IL 62258
Contact: Mary Kaye Richter
Tel: 618-566-2020
FAX: 618-566-4718
WWW: NFED
- Eczema
- National Eczema Society
163 Eversholt St
London NW1 1BU, United Kingdom
Tel: 0171 388 4097
Fax: 0171 388 5882
WWW: NES
- National Eczema Association for Science and Education
1220 SW Morrison, Suite 433
Portland, OR 97205
Tel: 800-818-7546 or 503-228-4430
Fax: 503-224-3363
WWW: NEASE
- Ehlers-Danlos Syndrome
- Ehlers-Danlos Syndrome Foundation
6399 Wilshire Blvd., Ste. 510
Los Angeles, CA 90048
Contact: Linda Neuman-Potash
Tel: 213-651-3038
Fax: 213-651-1366
WWW: EDS
- Epidermolysis Bullosa
- Genetic Disease
- The Alliance of Genetics Support Groups
4301 Connecticut Ave, NW, Suite 404
Washington, DC 20008-2304
Tel: 202-966-5557
Helpline: 800-336-GENE (4363)
FAX: 202-966-8553
WWW: AGSG
- Hansen's Disease
- Hemangiomas
See Klippel-Trenaunay Syndrome
- Hemochromatosis
- Hemochromatosis Research Foundation
P.O. Box 8569
Albany, NY 12208
Contact: Margit Krikker, MD
Tel: 518-489-0972
FAX: 518-489-0227
- Herpes
- Herpes Resource Center
American Social Health Association
P.O. Box 13827
Research Triangle Park, NC 27709
Tel: 919 -361-8488 (Questions)
Tel: 800 -230-6039 (Orders)
WWW: ASHA
- Histiocytosis
- Histiocytosis Association of America
332 North Broadway
Pitman, NJ 08071
Tel: 856-589-6606
WWW: HAA
- Human Papillomavirus
- HPV Support Program
American Social Health Association
P.O. Box 13827
Research Triangle Park, NC 27709
Tel: 800-227-8922
- Ichthyosis
- Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST)
650 N. Cannon Ave, Suite 17
Landsdale, PA 19446
Tel: 215-631-1411
Fax: 215-631-1413
e-mail: info@scalyskin.org
WWW: FIRST
- National Registry for Ichthyosis and Related Disorders
Dermatology, Box 356524
University of Washington
Seattle, WA 98195-6524
Contact:
Geoff Hamill, RN
e-mail: ichreg@u.washington.edu
Philip Fleckman, MD
e-mail: fleck@u.washington.edu
Tel: 800-595-1265
WWW: NRIRD
- Incontinentia Pigmenti
National Inconitentia Pigmenti Foundation
41 East 57th St, 5th floor
New York, NY 10022
Contact: Susanne B. Emmerich
Tel: 212-207-4636
Fax: 212-371-7345
WWW: NIPF
- Klippel-Trenaunay
- Klippel-Trenaunay Support Group
KT Syndrome
Contact: Judy Vessey
5404 Dundee Rd
Edina, MN 55436
Tel: 612-925-2596
FAX: 612-925-4708
WWW: K-T Support Group
- Leprosy (Hansen's Disease)
- Lice
- Lupus Erythematosus
- American Lupus Society
260 Maple Ct, Suite 123
Ventura, CA 93003
Tel: 800-331-1802 (Info Line); 805-339-0443; 805-339-0467 (FAX)
- Lupus Foundation of America, Inc.
4 Research Place, Suite 180
Rockville, MD 20850-3226
Tel: 301-670-9292
Tel: 800-558-0121
WWW: Lupus Foundation of America
- Lupus Home Page at Hamline University
WWW: See the Lupus Home Page
- Massachusetts Chapter
425 Watertown St
Newton, MA 02158-1131
Contact: Mimi LaCamera
Tel: 617-332-9014
- Bay Area Lupus Foundation
2635 North First St
Suite 206
San Jose, CA 95134
Contact: Jo Dewhirst
Tel: 408-954-8600 (Calif: 800-523-3363)
- Lymphomatoid Papulosis (and Ki-1 positive
cutaneous lymphomas)
- Lymphomatoid Papulosis Central Registry
Department of Pathology Beth Israel Hospital
330 Brookline Ave
Boston, MA 02215
Tel: 627-735-5886
- Marfan's Syndrome
- National Marfan Foundation
382 Main St
Port Washington, NY 11050
Tel: 516-883-8712
800-8-MARFAN
FAX: 516-883-8712
- Mastocytosis
- Melanoma
- American Melanoma Foundation
USC/Norris Cancer Center
2025 Zonal Ave
GH-10-442
Los Angeles, CA 90033-1034
Tel: 213-226-6352
FAX: 213-224-6925
- Melanoma Foundation
750 Menlo Ave
Suite 250
Menlo Park, CA 94025
Contact: Marsden S. Bloise, MD
- Muscular Dystrophy
- Muscular Dystrophy Association
342 Madison Ave
Room 1426
New York, NY 10173
Tel: 212-557-8450
- Mycosis Fungoides
- Myositis
- Myositis Association of America
755 Cantrell Ave, Suite C
Harrisonburg, VA 22801
Tel: (540) 433-7686
FAX: (540) 432-0206
WWW: MAA
- Neurofibromatosis
National Neurofibromatosis Foundation
95 Pine St - 16th Floor
New York, NY 10005
Contact: Peter R.W. Bellerman
Tel: 212-344-NNFF/6633 or 800-323-7938
FAX: 212 747-0004
WWW: Neurofibromatosis Online Service
- Nevi
- Nevus Network
Congenital Nevus Support Group
P.O. Box 1981
Woodbridge , VA 22192
Tel: (703) 492-0253
WWW: Nevus Network
- Nevus Outreach, Inc
1616 Alpha St
Lansing, MI 48910
Tel: 517-487-2306
WWW: www.nevus.org
- Ostomy
- United Ostomy Association
36 Executive Park
Suite 120
Irvine, CA 92714
Contact: Darlene A. Smith, Director
Tel: 714-660-8624 or 800-826-0826
- Patient Advocates
- Coalition of Patient Advocates
6600 S.W. 92nd Ave
Suite 300
Portland, OR 97223
Tel: 503-244-7404
FAX: 503-245-0626
- Pediculosis
- National Pediculosis Association
P.O. Box 149
Newton, MA 02161
Contact: Deborah Altschuler, Director
Tel: 617-449-6487
- Pemphigus and Pemphigoid
- The National Pemphigus Foundation
828 San Pablo Ave, Suite 203
Albany, CA
Contact: Janet Segall, Director
Tel: 510-527-4970
FAX: 510-527-8497
WWW: www.pemphigus.org
- The Pemphigus and Pemphigoid Society
15934 Hesperian Blvd #122
San Lorenzo, CA 94580
Tel: 510-755-4266
WWW: www.1clever.org
- Plastic Surgery
- Plastic Surgery Research Foundation
P.O. Box 2586
La Jolla, CA 92038
Contact: Edith Brookstein
Tel: 619-454-3212
- Porphyria
- American Porphyria Foundation
P.O. Box 22712
Houston, TX 77227
Contact: Desiree Lyon, Director
Tel:713-266-9617
Fax: 713-871-1788
WWW: APF
- Port Wine Stain
- National Congenital Port Wine Stain Foundation
123 East 63rd St
New York, NY 10021
Tel: 516-867-5137
FAX: 516-869-1278
- Pseudofolliculitis Barbae
- PFB Project (Pseudofolliculitis Barbae)
1875 Connecticut Ave
Suite 1140
Washington, DC 20009-5728
Contact: Melvin A. Alexander
Tel: 202-588-5300
- Pseudoxanthoma Elasticum (PXE)
- National Association for Pseudoxanthoma Elasticum, Inc. (NAPE)
1420 Ogden St
Denver, CO 80218-1910
Tel: 303 832-5055
FAX: 806 743-1603
E-Mail: derkhn@ttuhsc.edu
PXE International, Inc.
Sharon F. Terry, President
23 Mountain St
Sharon, MA 02067
Tel: 781-784-3817
FAX: 781-784-6672
WWW: PXE International, Inc.
- Psoriasis
- Canadian Psoriasis Foundation
1565 Carling Ave
1306 Wellington St., Suite 500F
Ottawa, Ontario CANADA K1Y-3B2
Tel: 613-728-4000
In Canada: 800-265-0926
National Psoriasis Foundation
6600 S.W. 92nd, Suite 300
Portland, OR 97223
Contact: Gail M. Zimmerman, Director
Tel: 503-244-7404 or 800-723-9166
Fax: 503-245-0626
WWW: National Psoriasis Foundation
- Psoriasis Research Association
107 Vista del Grande
San Carlos, CA 94070
Contact: Diane Bradley Mullins, Director
Tel 415-593-1392
- Psoriasis Society of Canada
National Office
P.O. Box 25015
Halifax, NS B3M 4H4
CANADA
Tel: 902-443-8680
FAX: 902-457-1664
-
Additional WWW Sites for Psoriasis available through Yahoo
- Rare Disorders
- Office of Rare Diseases
National Institutes of Health
Bethesda, MD 20892
WWW: ORD
- National Organization for Rare Disorders (NORD)
P.O. Box 8923
New Fairfield, CT 06812-8923
Contact: Abbe S. Myers, Director
Tel: 203-746-6518
Tel: 800-999-6673
FAX: 203-746-6481
WWW: NORD
- Rosacea
National Rosacea Society
800 South Northwest Highway
Suite 200
Barrington, IL 60010
Contact: Suzanne Corr
Tel: 847-382-8971
FAX: 847-382-5567
WWW: NRS
- Sarcoidosis
- Sarcoidosis Family Aid &
Medical Research Foundation
460 Central Ave
East Orange, NJ 07018
Contact: Geneva Ausley, President & Founder
Tel: 201-399-3644 or
800-203-6429
- Scabies
- Scleroderma
- Association des Sclerodermiques de France
22, Avenue d'Immercourt
62217 Tilloy les Mofflaines
Tel : (33) 21.24.18.72
WWW: www.cyberouest.fr/asf/
- Scleroderma Federation, Inc.
Peabody Office Bldg
One Newbury
Peabody, MA 01960
Contact: Jackie MaGoon, Director
Contact: Marte Coyle - President
Tel: 508-535-6600
FAX: 508-535-6696
WWW: S.F. Inc
- Scleroderma Federation of the
Tri State Area (NY, NJ, CT)
1882 Teaneck Rd
Teaneck, NJ 07666
Tel: 201-837-9826
- Scleroderma Foundation of Greater Chicago
175 West Jackson
Room 917
Chicago, IL 60604
Contact: Pat Straessle, Patient Services
Tel: 312-922-3532
- Scleroderma Info Exchange, Inc.
150 Hines Farm Rd
Cranston, RI 02921
Contact: Nancy D. Hersy, Director
Tel: 401-943-3909
- Scleroderma Research Foundation
2320 Bath St, Suite 307
Santa Barbara, CA 93105
Tel: 805-563-9133
Fax: 805-563-2402
- Scleroderma Society
1725 York Ave
Suite 29-F
New York, NY 10128
Contact: Mark Flagan, PhD., President
Tel: 212-427-7040
United Scleroderma Foundation
P.O. Box 399
Watsonville, CA 95077-0399
Contact: Nancy Wempe, Director
Contact: Diane Williams, Founder
Tel: 408-728-2202 or 800-722-HOPE
FAX: 408-728-3328
WWW: United Scleroderma Foundation
- Self Help
- National Self Help Clearinghouse
33 West 42nd St
Room 620-N
New York, NY 10036
Contact: Audrey Garnter
Tel: 212-840-1259
- Sexually Transmitted Diseases
- Shingles
See Chicken Pox, Varacella
- Sjogren's Syndrome
- National Sjögren Syndrome Association
21630 N. 19th Ave
Phoenix, AZ 85027
Tel: 602-516-0787
Toll-free number: 1-800-395-6772
1-800-395-NSSA - M-F, 9-4
FAX: 602-516-0111
- Sjögren's Syndrome Foundation, Inc.
333 North Broadway - Suite 2000
Jericho, NY 11753
Tel: 516-933-6365 Or 1-800-4 Sjogren
Fax: 516-933-6368
WWW: Sjögren's Syndrome Foundation
- Skin Research & Education for ALL Skin Disorders
- American Skin Association
150 East 58th St
32nd Floor
New York, NY 10155-0002
Tel: 212-753-8260
FAX: 212-688-6547
- Dermatology Foundation
1560 Sherman Ave
Evanston, IL 60201-4802
Tel: 708-328-2256
- Skin Cancer
- Social Health
- American Social Health Association (ASHA)
P.O. Box 13827
Research Triangle Park, NC 27709
Contact: Sharon Brom
Tel: 919-361-8400
Orders: 800-783-9877
FAX: 919-361-8425
WWW: ASHA
- Sturge-Weber Syndrome
- Sturge-Weber Foundation
P.O. Box 460931
Aurora, CO 80015
Tel: 303-360-7290
Tel: 800-627-5482
FAX: 303-360-7290
- Sturge-Weber Foundation (SWF)
PO Box 418
Mt. Freedom, NJ 07970
Tel: 201-895-4445
Tel: 800-627-5482
FAX: 201-895-4846
- Tuberous Sclerosis
- National Tuberous Sclerosis Association
8000 Corporate Dr
Suite 120
Landover, MD 20785
Contact: Carolyn Wilson
Tel: 301-459-9888 or 800-225-6872
WWW: NTSA
- Tuberous Sclerosis International - TSI
Secretariat TSI: Mrs. P. J. M. den Hollander
Prins Bernhardlaan 36
3722 AG Bilthoven
The Netherlands
Tel/Fax: +31 30 2281821
e-mail: jdenhollander@crystal.feo.hvu.nl
WWW: Pending Update - TSI
Addresses for TSI representatives in 26 countries world-wide.
- Tuberous Sclerosis Association of Great Britain
WWW: TSA
- Venereal Disease
- Vitiligo
- Frontier's International Vitiligo Foundation
4 Rozina Ct.
Owings Mills, MD 21117
- National Foundation for Vitiligo & Pigment Disorders
9032 South Normandy Dr.
Centerville, OH 45459
Tel: 513-885-5739
- National Organization for Albinism and Hypopigmentation
1530 Locust St.
Box 29
Philadelphia, PA 19102
Tel: 800-473-2310
- National Vitiligo Foundation, Inc.
Box 6337
Tyler, TX 75711
Contact: Allen C. Locklin, President
Cheryl McInnis, Director
Tel: 903-534-2925
FAX: 903-534-8075
WWW: National Vitiligo Foundation. Inc.
- Xeroderma Pigmentosum
Xeroderma Pigmentosum Society
57 Sleight Plass Rd
Poughkeepsie, N.Y. 12603
Contact: Mrs. Caren J. Mahar
Tel: 914-473-4735
WWW: XPS Home Page
- Xeroderma Pigmentosum Registry
Dept of Pathology
UMDNJ - New Jersey Medical School
185 S. Orange Ave
Newark, NJ 07103
Contact: W. Clark Lambert, MD
Tel: 201-982-4405
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May, 1995
Copyright © 1995 - 2004 / Dept. of Dermatology / University of Iowa / All Rights Reserved /
Last updated January 29, 2004