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.

    A | B | C | D | E | F | G | H | I | J | K | L | M | N | O | P | Q | R | S | T | U | V | W | X | Y | Z

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)

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

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