Patient Support Groups

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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AcneAcne 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

NorCal Psoriasis & Psoriatic Arthritis MeetUp Group
P.O. Box 71217
Oakland, CA 94612
Contact: Sonia Kalil, National Psoriasis Foundation
Phone: 503-436-5554
Email: skalil@psoriasis.org

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

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

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