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 |
