The Dermatology Nurses' Association
Nurses serving nurses for more than 30 years!

Patient Support Groups

The Dermatology Nurses' Association makes 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. Addresses and telephone numbers may have changed since this list was first posted.

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Acne

Acne Research Institute
1236 Somerset Lane
Newport Beach, CA 92660
Contact: James E. Fulton Jr., MD
Founder
Phone: 714-722-1805

AIDS

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

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 AIDS Hotline
English: 1-800-342-AIDS
Spanish: 1-800-344-7432

Pediatric AIDS Foundation
2407 Wilshire Boulevard
Suite 613
Santa Monica, CA 90403

San Francisco AIDS Foundation
P.O. Box 6182
San Francisco, CA 94101-6182
Contact: Pat Christen, Director
In CA: AIDS Hotline, 415-863-AIDS

Alopecia

Cicatricial Alopecia Research Foundation
PO Box 64158
Los Angeles, CA 90064
Contact: Sheila Belkin, CEO
Phone: 310-475-2419

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

National Heart Lung and Blood Institute
Bethesda, MD 20824-0105
Phone: 301-592-8573

Arthritis (Rheumatoid)

Arthritis Foundation
P.O. Box 1900
Atlanta, GA 30326
Phone: 404-872-7100 or 1-800-283-7800

Ataxia

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

Behcet's

American Behcet's Foundation, Inc.
P.O. Box 54063
Minneapolis, MN 55454-0063
Phone: 1-800-723-4238

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

Cancer

American Cancer Society
1599 Clifton Road, NE
Atlanta, GA 30329
Phone: 404-320-3333

National Cancer Institute
National Institute for Health
9000 Rockville Pike
Building 31, Room 10A31
Bethesda, MD 20892
Contact: Paul Van Nevel, Associate Director
Phone: 301-496-6631

Congenital Nevi

Nevus Outreach, Inc.
600 SE Delaware Ave., Suite 200
Bartlesville, OK 74003
Phone: 877-4-A-NEVUS

Dermatitis Herptiformis

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

Gluten Intolerance Group (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

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 V5Z 4E8 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

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

Eczema

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

National Eczema Association
4460 Redwood Hwy., Ste. 16 - D
San Rafael, CA   94903-1953
Phone 415.499.3474 / 800.818.7546
Fax: 415.472.5345

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

Dystrophic Epidermolysis Bullosa

DebRA of America, Inc.
5 West 36th Street Suite 404
New York, NY 10018
Tel: (212) 868-1573 or (866) DEBRA76 (866-332-7276)
Email: staff@debra.org

Suzanne J. Cohen, Executive Director
Abby Meadows, Development Manager
Alecia Baker, Office Manager

National Epidermolysis Bullosa Registry
Jo-David Fine, MD, MPH
Vanderbilt University Medical Center
Department of Dermatology
1900 Patterson Street, Suite 100
Nashville, TN 37203
(615) 329-0801; fax (615) 320-7055

Hemochromatosis

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

Herpes Virus

American Social Health Association
P.O. Box 13827
Research Triangle Park, NC 27709
Voice: (919) 361-8400 Fax: (919) 361-8425

Herpes Hotline
Phone: 919-361-8488

Hotlines

List of various medical hotlines

Hyperhidrosis

International Hyperhidrosis Society
2560 Township Road, Suite B
Quakertown, PA 18951
Contact: Lisa J. Pieretti, MBA, Executive Director
Phone: 610-346-6008

Ichthyosis

Ichthyosis Foundation of America
710 Laurel Avenue
B-8
San Mateo, CA 94401

Foundation for Ichthyosis and Related Skin Types (F.I.R.S.T.)
1601 Valley Forge Road
Lansdale, PA 19446
Phone: 215-631-1411
Fax: 215-631-1413
info@scalyskin.org

Inflammatory Skin Disease

Inflammatory Skin Disease Institute
PO Box 1074
Newport News, VA 23601
Phone: (757) 223-0795
Fax: (757) 595-1842
Contact: LaDonna Williams, Executive Director at ladonna.williams@isdionline.org

Just for Kids

Camp Discovery
American Academy of Dermatology
930 E Woodfield Road
Schaumburg, IL 60173
Contact: Janine Mueller at jmueller@aad.org or 1-847-240-1737.

Pediatric AIDS Foundation
2407 Wilshire Boulevard
Suite 613
Santa Monica, CA 90403

Klippel-Trenaunay

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

Leprosy

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

Lice

See Pediculosis

Lupus

Lupus Foundation of America, Inc.
2000 L Street, NW, Suite 710
Washington, DC 20036
Phone: 202-349-1155
Fax 202-349-1156

Lymphoma

Cutaneous Lymphoma Foundation
PO Box 374
Birmingham, MI 48012
Phone: 248-644-9014

Melanoma

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

The American Melanoma Foundation
2160 Fletcher Parkway, Suite O
El Cajon, CA 92020
Phone: 619-448-0991
Fax: 619-448-2902

Melanoma International Foundation
250 Mapleflower Road,
Glenmoore PA 19343
Phone/Fax: 610-942-3432
Contact: Catherine M. Poole, President and Founder

Muscular Dystrophy

Muscular Dystrophy Association
3300 E. Sunrise Drive
Tucson, AZ 85718
Phone: 800-572-1717

Neurofibromatosis

National Neurofibromatosis Foundation
95 Pine Street - 16th Floor
NY, NY 10005
Contact: Peter R.W. Bellerman, President
Phone: 212-460-8980 or 800-323-7938

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

United Ostomy Association of Canada
P.O. Box 825-50 Charles Street East
Toronto ON M4Y 2N7
Phone: 1-416-595-5452 or1-888-969-9698
Fax: 1-416-595-9924
E-mail: uoacan@astral.magic.ca

Pachyonychia Congenita

Pachyonychia Congenita Project
2386 East Heritage Way, Suite B
Salt Lake City, UT 84109
Phone: 877-628-7300
Fax: 877-628-7399
Email: info@pachyonychia.org 

Pediculosis

National Pediculosis Association
50 Kearney Road
Needham, MA 02494
(781)449-NITS
Fax: 781-449-8129
E-mail: npa@headlice.org

Pemphigus & Pemphigoid

International Pemphigus & Pemphigoid Foundation
2701 Cottage Way #16
Sacramento, CA 95825
Phone: 916-922-1298

Plastic Surgery

The American Board of Plastic Surgery
Seven Penn Center, Suite 400
1635 Market Street
Philadelphia, PA 19103-2204
Phone: 215-587-9322
Fax: 215-587-9622
E-mail: info@abplsurg.org

American Society of Plastic Surgeons: Plastic Surgery Educational Foundation
444 E. Algonquin Rd.
Arlington Heights, IL 60005

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

Pseudofolliculitis Barbae

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

Psoriasis

National Psoriasis Foundation
6600 SW 92nd Ave., Suite 300
Portland, OR 97223-7195
Phone: 503-244-7404 or 800-723-9166
Fax: 503-245-0626
E-mail: getinfo@psoriasis.org

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

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

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

Rare Disorders

National Organization for Rare Disorders (NORD)
P.O. Box 8923
New Fairfield, CT 06812-8923
Contact: Abbe S. Myers, Executive Director
Phone: 203-746-6578

Scabies

See Pediculosis

Scleroderma

Scleroderma Foundation
12 Kent Way, Suite 101
Byfield, MA 01922
Phone: 978-463-5843 or 800-722-HOPE (4673)
E-mail: sfinfo@scleroderma.org

Scleroderma Federation, Inc.
Peabody Office Building
One Newbury
Peabody, MA 01960
Contact: Jackie MaGoon, Executive Director
Phone: 508-535-6600

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

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

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

United Scleroderma Foundation
P.O. Box 399
Watsonville, CA 95077-0399
Contact: Nancy Wempe, Executive Director
Phone: 408-728-2202 or 800-722-HOPE

Sjogren Syndrome

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

Skin Cancer

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

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

Sturge-Weber Syndrome/Port Wine Birthmarks

The Sturge-Weber Foundation
PO Box 418
Mt. Freedom, NJ 07970-0418
Phone: 973-895-4445 or 800-627-5482
Fax: 973-895-4846
Email: swf@sturge-weber.org 

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

Tuberous Sclerosis Alliance
801 Roeder Road, Suite 750
Silver Spring, MD 20910
Phone: 800-225-6872
Fax: 301-562-9870

Venereal Disease

See Social Health

Vitiligo

National Vitiligo Foundation
611 S. Fleishel Ave
Tyler, TX 75701
Contact: Shannon Hearron, Director
Phone: 903-531-0074

Xeroderma Pigmentosum

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

Xeroderma Pigmentosum Society, Inc.
437 Snydertown Road
Craryville, N.Y. 12521
Phone/Fax: 518-851-2612
Phone: 877-977-2873 or 877-XPS-CURE

XP FAMILY SUPPORT GROUP
8495 Folsom Blvd #1
Sacramento, CA 95826
Phone: 916-628-3814 or 916-379-0741