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Support Groups

This information was taken from The University of Iowa Department of Dermatology home page, and was initially developed by the Dermatology Nurses' Association (DNA) and was accurate as of May, 1994. Addresses and telephone numbers may have changed since then.

This list was partially upgraded in 1995 and 2009. Links to WWW sites and e-mail addresses will be added as they become available.

The Department of Dermatology and the University of Rochester make no recommendation or endorsement of the organizations or resources 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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AIDS

• AIDS Hotline
  Phone: 800-243-AIDS (Illinois Only)

   

• American Foundation for AIDS Research
  733 3rd Avenue
  12th Floor
  New York, NY 10017
  Phone: 212-682-7440
  FAX: 212-682-9812
  

   

• Center for Disease Control
  National AIDS Information Clearinghouse
  Phone: 800-458-5231
  

   

• Gay Men's Health Crisis
  129 West 20th Street
  New York, NY 10011
  Phone: 212-807-6655
  

   

• HIV Testing & Counseling - STD Clinic
  Howard Brown Memorial Clinic
  945 West George
  Chicago, IL 60657
  Contact: Social Services Dept.
  Phone: 312-871-5777
  

   

• National S.T.D. Hotline
  Phone: 800-227-8922
  

   

• National HIV / AIDS Hotline
  Centers for Disease Control
  English: 1-800-342-AIDS
  Spanish: 1-800-344-7432
  

   

• Pediatric AIDS Foundation
  1311 Colorado Avenue
  Santa Monica, CA 90404
  Phone: 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; Phone: 415-863-AIDS or
  800-367-2437 (Northern California only)
  

   

Albinism

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

   

• National Organization for Albinism and Hypopigmentation
  1530 Locust St.
  Box 29
  Philadelphia, PA 19102
  Phone: 800-473-2310
  

   

Alopecia Areata

• National Alopecia Areata Foundation
  710 "C" Street, Suite 11
  P.O. Box 150760
  San Rafael, CA 94915-0760
  Contact: Vicki Kalabokes, Executive Director
  Phone: 415-456-4644
  Fax: 415-456-4274
  

   

Anemia

• Fanconi's Anemia International Registry
  c/o Arleen Auerbach, PhD
  Laboratory for Investigative Dermatology
  The Rockefeller University
  1230 York Avenue
  New York, NY 10021-6399
  Phone: 212-327-8862
  

   

Arthritis (Rheumatoid)

• WWW Sites for Rheumatology Information available through Yahoo.

   

• WWW Sites for Rheumatology Resources

   

• Arthritis Foundation
  P.O. Box 1900
  Atlanta, GA 30326
  Phone: 404-872-7100 or 1-800-568-4045
  WWW: See the Arthritis Foundation Home Page
  

   

Ataxia

• National Ataxia Foundation
  15500 Wazata Boulevard, Ste. 750
  Wayzata, MN 55391-3750
  Contact: Donna Gruetzmacher, Executive Director
  Phone: 612-473-7666
  FAX: 612-473-9289
  

   

Index

Behcet's Syndrome

• American Behcet's Disease Association
  P.O. Box 54063
  Minneapolis, MN 55454-0063
  Phone: 1-800-723-4238
  Phone: 1-800-7BEHCETS
  WWW: American Behcet's Disease Association

   

Bloom's Syndrome

• Bloom's Syndrome Registry
  c/o Laboratory of Human Genetics
  The New York Blood Center
  310 East 67th Street
  New York, NY 10021
  Contact: James L. German, III, MD Registrar
  Phone: 212-570-3075
  FAX: 212-570-3195
  

   

Index

Cancer

• WWW Sites for Cancer Information available through Yahoo.

   

• American Cancer Society
  1599 Clifton Road, NE
  Atlanta, GA 30329
  Phone: 404-320-3333
  FAX: 404-325-2217
  WWW: American Cancer Society
  

   

• National Cancer Institute
  Office of Communications
  National Institute for Health
  9000 Rockville Pike
  Building 31, Room 10A31
  Bethesda, MD 20892
  Contact: Paul Van Nevel, Associate Director
  Phone: 301-496-6631
  Phone: 1-800-4-CANCER
  FAX: 301-402-4945
  WWW: National Cancer Institute
  

   

Chicken Pox Shingles

• VZV Research Foundation
  36 East 72nd Street
  New York, New York 10021
  Phone: 212-472-3181
  

   

Index

Dermatitits Herpetiformis

• American Celiac Society
  58 Musano Court
  West Orange, NJ 07052
  Phone: 201-325-8837
  

   

• Celiac Disease Foundation
  13251 Ventura Boulevard
  Number 3
  Studio City, CA 91604-1838
  Phone: 402-558-0600
  

   

• Celiac Sprue Association/USA
  P.O. Box 31700
  Omaha, NE 68131
  Phone: 402-558-0600
  

   

• Gluten Intolerance Group of North American (Dermatitis Herpetiformis)
  P.O. Box 23053
  Seattle, WA 98102-0353
  Contact: Elaine Hartsook, PhD, RD, Executive Director
  Phone: 206-325-6980
  Fax: 206 850-2394
  

   

Dermatomyositis

• Muscular Dystrophy Association (MDA)
  3300 E. Sunrise Drive
  Tucson, AZ 85718-3208
  Phone: 602-529-2000
  Fax: 601-529-5300
  

   

Dermatology

• WWW Sites for Dermatolgy Information available through Yahoo.

   

• Dermatology Foundation
  1560 Sherman Avenue
  Suite 302
  Evanston, IL 60201-4802
  Contact: Sandra Rahn Goldman, Executive Director
  Phone: 708-328-2256
  

   

• International Foundation for Dermatology
  855 West 10th
  Vancouver, BC V5Z1L7 CANADA
  Contact: Stuart Martin
  Phone: 604-874-6112
  

   

Dermatopathology

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

   

Dysautonomia

• Dysautonomia Foundation, Inc.
  20 East 46th Street - Suite 302
  New York, NY 10017
  Phone: 212-949-6644
  FAX: 212-682-7625
  

   

Index

Ectodermal Dysplasia

• National Foundation for Ectodermal Dysplasia
  219 East Main Street
  Box 114
  Mascoutah, IL 62258
  Contact: Mary Kaye Richter, Executive Director
  Phone: 618-566-2020
  FAX: 618-566-4718
  

   

Eczema

• National Eczema Society
  Travistock House North
  London WC1 9SR United Kingdom
  Phone: 01-38804097
  

   

• Eczema Association for Science and Education
  1221 S.W. Yamhill
  Suite 303
  Portland, OR 97205
  Phone: 503-228-4430
  FAX: 313-282-2793
  

Ehlers Danlos Syndrome

• Ehlers Danlos Syndrome Foundation
  P.O. Box 1212
  Southgate, MI 48195
  Contact: Nancy Rogowski, Executive Director
  Phone 313-282-0180
  Fax: 313-282-2793
  

   

Epidermolysis Bullosa

• Dystrophic Epidermolysis Bullosa
  Research Association of America
  (D.E.B.R.A. of America, Inc.)
  141 Fifth Avenue
  New York, NY 10010
  Contact: Miriam Feder, Executive Director
  Phone: 212-995-2220
  

   

• National Epidermolysis Bullosa Registry
  Clinical Coordinating Center
  University of North Carolina - Chapel Hill
  Department of Dermatology
  Room 137 - NCMH
  Chapel Hill, NC 27514
  Phone: 919-966-3321
  Phone: 919-966-6383
  

   

Index

Genetic Disease

• Alliance of Genetics Support Groups
  35 Wisconsin Circle, Suite 440
  Chevy Chase, MD 20815
  Phone: 301 652-5553
  FAX: 301-654-0171
  

   

Index

Hansen's Disease

• See Leprosy

   

Hemangiomas

• See Klippel-Trenaunay Syndrome

   

Hemochromatosis

• Hemochromatosis Research Foundation
  P.O. Box 8569
  Albany, NY 12208
  Contact: Margit Krikker, MD
  Phone: 518-489-0972
  FAX: 518-489-0227
  

   

Herpes

• WWW Sites for Herpes Information available through Yahoo.

   

• National Herpes Resource Center
  American Social Health Association
  P.O. Box 13827
  Research Triangle Park, NC 27709
  Phone: 919-361-8488
  

   

• National Herpes Hotline
  Phone: 919-361-8485
  

   

Histiocytosis

• Histiocytosis Association of America, Inc.
  609 New York Road
  Glassboro, NJ 08028
  Phone: 609-881-4911
  

   

Human Papilloma-virus

• HPV Support Program
  American Social Health Association
  P.O. Box 13827
  Research Triangle Park, NC 27709
  Phone: 800-227-8922
  

   

Index

Ichthyosis

• Foundation for Ichthyosis and Related Skin Types, Inc. (F.I.R.S.T.)
  P.O.Box 20921
  Raleigh, NC 27619-0921
  Phone: 919 782-5728
  FAX: 919-781-0679
  Also: 800-545-3286
  

   

• National Registry for Ichthyosis and Related Disorders
  Dermatology, Box 356524
  University of Washington
  Seattle, WA 98195-6524
  Contacts:
  Geoff Hamill, RN, Registry Coordinator
  e-mail: geoff@u.washington.edu
  Philip Fleckman, MD, Principal Investigator
  e-mail: fleck@u.washington.edu
  Phone: 800-595-1265
  

   

Index

Trenaunay

• K-T Support Group
  KT Syndrome
  4509 Wood Dale Avenue
  Edina, MN 55424
  Contact: Judy Vessey, President
  

   

Index

Leprosy

• Damien Dutton Society for Leprosy Aid
  616 Bedford Avenue
  Bellmore, NY 11710
  Contact: Howard Crouch, President
  Phone: 516-221-5929
  

   

Lupus Erythematosus

• WWW Sites for Lupus Information available through Yahoo.

   

• American Lupus Society
  3914 Del Amo Blvd., Suite 922
  Torrance, CA 90503
  Contact: Charlean Wakefield
  Phone: 888-532-2322
  

   

• Lupus Foundation of America, Inc.
  1717 Massachusetts Avenue, NW
  Suite 203
  Washington, DC 20036
  Contact: John Huber, Executive Director
  Phone: 800-558-0121
  WWW: See the Lupus Home Page

   

• Massachusetts Chapter
  425 Watertown Street
  Newton< MA 02158-1131
  Contact: Mimi LaCamera
  Phone: 617-332-9014
  

   

• Bay Area Lupus Foundation
  2635 North First Street
  Suite 206
  San Jose, CA 95134
  Contact: Jo Dewhirst, Executive Director
  Phone: 408-954-8600 (In Calif: 800-523-3363)
  

   

Lymphomatoid Papulosis

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

   

Index

Marfan's Syndrome

• WWW Sites for Marfan's Information available through Yahoo.

   

• National Marfan Foundation
  382 Main Street
  Port Washington, NY 11050
  Phone: 516-883-8712
  800-8-MARFAN
  

   

Melanoma

• Also see Skin Cancer

   

• WWW Sites for Melanoma Information available through Yahoo.

   

• American Melanoma Foundation
  USC/Norris Cancer Center
  2025 Zonal Avenue
  GH-10-442
  Los Angeles, CA 90033-1034
  Phone: 213-226-6352
  FAX: 213- 224-6925
  

   

• Melanoma Foundation
  750 Menlo Avenue
  Suite 250
  Menlo Park, CA 94025
  Contact: Marsden S. Bloise, MD, President
  

   

Muscular Dystrophy

• WWW Sites for Muscular Dystrophy Information available through Yahoo.

   

• Muscular Dystrophy Association
  342 Madison Avenue
  Room 1426
  New York, NY 10173
  Phone: 212-557-8450
  

   

Index

Nuerofibromotosis

• National Neurofibromatosis Foundation
  141 Fifth Avenue
  New York, NY 10010
  Contact: Peter R.W. Bellerman, President
  Phone: 212-460-8980 or 800-323-7938
  

   

Nevi

• Nevus Network
  Congenital Nevus Support Group
  1400 South Joyce Street
  Number C-1201
  Arlington, VA 22202
  Phone: 703-920-3249
  or 405-377-3403
  

   

Index

Ostomy

• United Ostomy Association
  36 Executive Park
  Suite 120
  Irvine, CA 92714
  Contact: Darlene A. Smith, Executive Director
  Phone: 714-660-8624 or 800-826-0826
  

   

Index

Patient Advocates

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

   

Pediculosis

• National Pediculosis Association
  P.O. Box 149
  Newton, MA 02161
  Contact: Deborah Altschuler, Executive Director
  Phone: 617-449-6487
  

   

Plastic Surgery

• Plastic Surgery Research Foundation
  P.O. Box 2586
  La Jolla, CA 92038
  Contact: Edith Brookstein
  Phone: 619-454-3212
  

   

Porphyria

• American Porphyria Foundation
  P.O. Box 22712
  Houston, TX 77227
  Contact: Desiree Lyon, Executive Director
  Phone: 713-266-9617
  Fax: 713-871-1788
  

   

Port Wine Stain

• National Congenital Port Wine Stain Foundation
  123 East 63rd Street
  New York, NY 10021
  Phone 516-867-5137
  FAX: 516-869-1278
  

   

Psuedo Folliculitis

• PFB Project (Pseudofolliculitis Barbae)
  1875 Connecticut Avenue
  Suite 1140
  Washington, DC 20009-5728
  Contact: Melvin A. Alexander
  Phone: 202-588-5300
  

   

Psoriasis

• WWW Sites for Psoriasis available through Yahoo.

   

• Canadian Psoriasis Foundation
  1565 Carling Avenue
  1306 Wellington St., Suite 500F
  Ottawa, Ontario CANADA K1Y-3B2
  Phone: 613-728-4000
  In Canada: 800-265-0926
  

   

• International Federation of Psoriasis Associations
  Arne Jensseen, President
  Moneheia 80
  4752 Hamresanden NORWAY
  

   

• National Psoriasis Foundation
  6600 S.W. 92nd
  Suite 300
  Portland, OR 97223
  Contact: Gail M. Zimmerman, Executive Director
  Phone: 503-244-7404 or 800-723-9166
  Fax: 503-245-0626
  e-mail: 76135.2746@compuserve.com
  WWW: The National Psoriasis Foundation
  

   

• Psoriasis Research Association
  107 Vista del Grande
  San Carlos, CA 94070
  Contact: Diane Bradley Mullins, Executive Director
  Phone 415-593-1392 (1pm - 10pm Western Time)
  

   

• Problem Psoriasis Clinic
  909 Ridgeway Loop Road
  Memphis, TN 38120
  Phone: 901-767-3612
  FAX: 901-761-5468
  

   

• Psoriasis Research Institute
  600 Town & Country Village
  Palo Alto, CA 94301
  Contact: Robert D. Olds, Business Manager
  Phone: 415-326-1848
  FAX: 415-326-1262
  

   

• Psoriasis Society of Canada
  National Office
  P.O. Box 25015
  Halifax, NS B3M 4H4
  CANADA
  Phone: 902-443-8680
  FAX: 902-457-1664
  

   

Index

Rare Disorders

• National Organization for Rare Disorders (NORD)
  P.O. Box 8923
  New Fairfield, CT 06812-8923
  Contact: Abbe S. Myers, Executive Director
  Phone: 203-746-6518
  Phone: 800-999-6673
  FAX: 203-746-6481
  WWW: NORD
  

   

• The Rare Disorder Network Database
  David Robertson, M.D., Director
  General Clinical Research Center
  Vanderbilt University
  Nashville, TN 37232-2195
  Contact: Sylvia Dickinson, R.N., M.S.N.
  Coordinator Rare Disorder Network
  (615) 343-0124 or (615) 343-1427
  WWW: Vanderbilt Clinical Research Center
  

   

Rosacea

• National Rosacea Society
  220 South Cook Street
  Suite 201
  Barrington, IL 60010
  Contact: Suzanne Corr
  Phone: 708-382-8971
  FAX: 708-382-5567
  

   

Index

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
  

   

Scabies

• See Pediculosis

   

Scleroderma

• WWW Sites for Scleroderma Information available through Yahoo.

   

• Scleroderma Federation, Inc.
  Peabody Office Building
  One Newbury
  Peabody, MA 01960
  Contact: Jackie MaGoon, Executive Director
  Contact: Marte Coyle - President
  Phone: 508-535-6600
  FAX: 508-535-6696
  

   

• Scleroderma Federation of the Tri State Area (NY, NJ, CT)
  1882 Teaneck Road
  Teaneck, NJ 07666
  Phone: 201-837-9826
  

   

• Scleroderma Foundation of Greater Chicago
  175 West Jackson
  Room 917
  Chicago, IL 60604
  Contact: Pat Straessle, Patient Services
  Phone: 312-922-3532
  

   

• Scleroderma Info Exchange, Inc.
  150 Hines Farm Road
  Cranston, RI 02921
  Contact: Nancy D. Hersy, Executive Director
  Phone: 401-943-3909
  

   

• Scleroderma Research Foundation
  2320 Bath Street, Suite 307
  Santa Barbara, CA 93105
  Phone: 805-563-9133
  Fax: 805-563-2402
  

   

• Scleroderma Society
  1725 York Avenue
  Suite 29-F
  New York, Ny 10128
  Contact: Mark Flagan, PhD., President
  Phone: 212-427-7040
  

   

• Scleroderma Foundation
  P.O. Box 399
  Watsonville, CA 95077-0399
  Contact: Nancy Wempe, Executive Director
  Contact: Diane Williams, Founder
  Phone: 408-728-2202 or 800-722-HOPE
  FAX: 408-728-3328
  WWW: Scleroderma Foundation

   

Self Help

• National Self Help Clearinghouse
  33 West 42nd Street
  Room 620-N
  New York, NY 10036
  Contact: Audrey Garnter, Associate Director
  Phone: 212-840-1259
  

   

Shingles

• See Chicken Pox, Varacella

   

Sjögren Syndrome

• National Sjögren Syndrome Association
  21630 N. 19th Avenue
  Phoenix, AZ 85027
  Phone: 602-516-0787
  Fax: 602-516-0111
  

   

• Sjögren's Syndrome Foundation, Inc.
  3382 Main Street
  Port Washington, NY 11050
  Phone: 516-767-2866
  Fax: 516-767-7156
  WWW: Sjögren's Syndrome Foundation
  

   

Skin Research and Education for all Skin Disorders

• American Skin Association
  150 East 58th Street
  32nd Floor
  New York, NY 10155-0002
  Phone: 212-753-8260
  FAX: 212- 688-6547
  

   

• Dermatology Foundation
  1560 Sherman Avenue
  Evanston, IL 60201-4802
  Phone: 708-328-2256
  

   

Skin Cancer

• Also see Melanoma

   

• Skin Cancer Foundation
  245 Fifth Avenue
  Suite 2402
  New York, NY 10016
  Contact: Mitzi Moulds, Executive Director
  Phone: 212-725-5176
  

   

• Nevoid Basal Cell Carcinoma Syndrome Support Network
  3902 Greencastle Ridge Drive, #204
  Number 204
  Buttonsville, MD 20866
  Phone 800-264-8099 or 800-815-4447
  FAX: 213-244-6925
  email: PFis11@aol.com
  WWW: NBCCS
  Contact: Susan Charren, Executive Director;
  Penni Fischer, Director
  

   

Social Health

• American Social Health Association (ASHA)
  P.O. Box 13827
  Research Triangle Park, NC 27709
  Contact: Sharon Brom, Public Relations Specialist
  Phone: 919-361-8400
  Orders: 800-783-9877
  FAX: 919-361-8425
  

   

Sturge-Weber Syndrome

• Sturge-Weber Foundation
  P.O. Box 460931
  Aurora, CO 80015
  Phone: 303-360-7290
  Phone: 800-627-5482
  FAX: 303-360-7290
  

   

Index

Tuberous Sclerosis

• National Tuberous Sclerosis Association
  8000 Corporate Drive
  Suite 120
  Landover, MD 20785
  Contact: Carolyn Wilson
  Phone: 301-459-9888 or 800-225-6872
  

   

Index

Venereal Disease

• See Social Health

   

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
  Phone: 513-885-5739
  

   

• National Vitiligo Foundation, Inc.
  Box 6337
  Tyler, TX 75711
  Contact: Allen C. Locklin, President
  Cheryl McInnis, Executive Director
  Phone: 903-534-2925
  FAX: 903-534-8075
  e-mail: 73071.33@compuserve.com
  WWW: National Vitiligo Foundation, Inc.
  Also see: V.I.P. - the Vitiligo Information Pages

   

Index

Xeroderma

• Xeroderma Pigmentosum Registry
  Department of Pathology
  UMDNJ - New Jersey Medical School
  185 South Orange Avenue
  Newark, NJ 07103
  Contact: W. Clark Lambert, MD, Associate Professor
  Phone: 201-982-4405

   

Index

 

 

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