Foundations, Institutes and Support Groups

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Foundations, Institutes and Support Groups

AIDS

AIDS Hotline
Phone: (800) 243-AIDS (Illinois only)
Web site: www.hivpositive.com/f-Resources/f-15A-Hotlines/15-StateHotlines.html
American Foundation for AIDS Research
120 Wall Street
13th Floor
New York, NY 1005-3902
Phone: (212) 806-1600 Fax: (212) 806-1601
The Body
An AIDS and HIV Information Resource
Web site: www.thebody.com
Center for Disease Control
National AIDS Information Clearinghouse
Phone: (800) 458-5231
Gay Men's Health Crisis
119 West 24th Street
New York, NY 10011
Phone: (212) 367-1000 Hotline: (800) 243-7692
National HIV/AIDS Hotline
Center for Disease Control
Phone: (800) 342-AIDS
Pediatric AIDS Foundation
2950 31st Street
Suite 125
Santa Monica, CA 90405
Phone: (310) 395-9051 Fax: (310) 314-1469
People with AIDS Coalition
50 West 17th Street
8th Floor
New York, NY 10011
Phone: (212) 647-1415
California AIDS Foundation
P.O. Box 426182
San Francisco, CA 94142-6182
Phone: (415) 863-AIDS or (800) 367-2437 (CA only)

Albinism

National Organization for Albinism & Hypopigmentation
PO Box 959
East Hampstead, NH 03826-0959
Phone: (603) 887-2310 Fax: (603) 887-6049
E-mail: info@albinism.org
Web site: www.albinism.org

Alopecia

Cicatricial Alopecia Research Foundation
PO Box 64158
Los Angeles, CA 90064
E-mail: info@carfintl.org
Web site: www.carfintl.org/faq.html
National Alopecia Areata Foundation
Alopecia Areata
PO Box 150760
San Rafael, CA 94915-0760
Phone: (415) 472-3780
Fax: (415) 472-5343
Email: info@naaf.org
Web site: www.naaf.org

Anemia

Fanconi's Anemia International Registry
Human Genetics & Hematology
1230 York Avenue
New York, NY 10021-6399
Phone: (212) 327-8862 Fax: (212) 327-8262

Arthritis

Arthritis Foundation
Post Office Box 1900
Atlanta, GA 30326
Contact: Arthur I. Grayzel, M.D., Senior Vice President
Phone: (800) 283-7800 Fax: (404) 872-0457
Web site: www.arthritis.org
Please call your local chapter.

Ataxia-Telangiectasia

National Ataxia Foundation
2600 Fernbrook Lane
Suite 119
Minneapolis, MN 55447-4752
Contact: Donna Gruetzmacher, Executive Director
Phone: (763) 553-0020 Fax: (763) 553-0167
E-mail: mnaf@ataxia.orgai
Web site: www.ataxia.org

Basal Cell Carcinoma

See Skin Cancer

Behcet's

American Behcet's Disease Association
PO Box 280240
Memphis, TN 38168-0240
Phone: 800-7BEHCETS
E-mail: nyyy49@prodigy.com
Web site: www.behcets.com
American Behcet's Foundation, Inc.
P.O. Box 54063
Minneapolis, MN 55454-0063
Phone: (800) 723-4238
Web site: www.w2.com/behcets.html

Birthmarks

Vascular Birthmark Foundation
P.O. Box 106
Latham, N.Y. 12110
Contact: Linda Shannon, Executive Director
Phone: (877) VBF-LOOK
(877) VBF-4646 (Evenings & Weekends)
E-mail: Linda@birthmark.org
Web site: www.birthmark.org/

Bloom's Syndrome

Bloom's Syndrome Registry
Laboratory of Human Genetics/New York Blood Center
310 East 67th Street
New York, NY 10021
Contact: James L. German, III, M.D., Registrar
Phone: (212) 570-3075 Fax: (212) 570-3195

Burns

TOMA Foundation for Burned Children
310 - 5051 Clanranald Avenue
Montreal, QC., H3X 2S3
Phone: (416) 410-TOMA (8662)
E-mail: toma@fondtomafound.org
Web site: www.fondtomafound.org

Cancer

Also see Skin Cancer & Ataxia Telangiectasia
American Cancer Society
100 West Palatine Road
Suite 150
Palatine, IL 60067
Phone: (800) ACS-2345
Web site: www.cancer.org
National Cancer Institute
Office of Communications
9000 Rockville Pike
Building 31, Room 10-A-31
Bethesda, MD 20892
Cancer Information Service (800) 4-CANCER
Web site: www.cancer.gov
National Coalition for Cancer Survivorship
1010 Wayne Avenue
Suite 505
Silver Spring, MD 20910-5600
Phone: (888) YES-NCCS (888-937-6227) or (301) 604-0158
Fax: (301) 565-9670
E-mail: minfo@cansearch.org
Web site: www.cansearch.org

Cockayne's Syndrome

Cockayne's Syndrome Network, Inc.
Shirley Rodriguez
PO Box 570618
Dallas, TX 75357
Phone: (214) 728-2679 or (972) 613-6273
Fax: (972) 613-4590
E-mail: J93082@aol.com
Web site: www.cockayne-syndrome.org

Darier-White Syndrome

See Ichthyosis

Dermatitis Herptiformis

American Celiac Society
P.O. Box 23455
New Orleans, LA. 70183
Phone: (973) 325-8837 Fax: (973) 669-8808
Email: AmerCeliacSoc@netscape.net
Celiac Disease Foundation
13251 Ventura Boulevard
Suite 1
Studio City, CA 91604-1838
Phone: (818) 990-2354 Fax: (818) 990-2379
E-mail: cdf@celiac.org
Web site: www.celiac.org
Celiac Sprue Association/USA
P.O. Box 31700
Omaha, NE 68131
Phone: (402) 558-0600

Dermatomyositis

Muscular Dystrophy Association (MDA)
3300 East Sunrise Drive
Tucson, AZ 85718
Phone: (800) 572-1717 Fax: (520) 529-5300
E-mail: mda@mdausa.org
Web site: www.mdausa.org

Dermatopathology

Dermatopathology Foundation
279 Turnpike Street
Canton, MA 02021
Contact: Wendy Christison, Administrator
Phone:(781) 821-0648 Fax: (781) 821-6586

Dysautonomia

Dysautonomia Foundation, Inc.
633 3rd Avenue - 12th Floor
New York, NY 10017
Phone: (212) 949-6644 Fax: (212) 682-7625
Epidermo Dysplasia Verruciformis
Paul E. Keener Registry
Robert Byrd Health Sciences Center
Box 9167
Morgantown, WV 26506
Phone: (304) 293-2804 Fax: (304) 293-8824

Erythema Multiform

Stevens-Johnson's Syndrome Foundation
PO Box 350333
Westminster, CO 80035
Phone: (303) 635-1241
Fax: (303) 469-2528
E-mail: sjsupport@aol.com
Web site: www.stevensjohnsonsyndrome.net
See Anemia

Genetic Disease

The Genetic Alliance
4301 Connecticut Avenue, NW
Suite 404
Washington, DE 20008
Phone: (202) 966-5557 Fax: (202) 966-8553
Helpline: (800) 336-GENE
E-mail: info@geneticalliance.org
Web site: http://www.geneticalliance.org

Genital Warts

See Social Health

Hansen's Disease

See Leprosy

Hemangioma

See Birthmarks

Hemochromatosis

Hemochromatosis Foundation, Inc.
P.O. Box 8569
Albany, NY 12208
Phone: (518) 489-0972 Fax: (518) 489-0227
Web site: www.hemochromatosis.org

Herpes

Herpes Resource Center
American Social Health Association
P.O. Box 13827
Research Triangle Park, NC 27709
Contact: Leigh Jolley, Program Coordinator
Phone: (919) 361-8488 (National Herpes Hotline)
Purchase Herpes Info: (800) 230-6039
Web site: www.ashastd.org
Hidradenitis Suppurativa, (Acne Inversa)

Hidradenitis Suppurativa, (Acne Inversa)
Hidradenitis Suppurativa Foundation, Inc.
7895 Via Belfiore #4
San Diego, CA 92129
Phone: (858) 901-4747 Fax: (619) 239-3271
Email: info@hs-foundation.org
Web site: www.hs-foundation.org

Histiocytosis

Histiocytosis Association of America, Inc.
332 N. Broadway
Pitman, NJ 08071
Phone-1-800-548-2758 (US and Canada Only)
Phone 1-856-589-6606
Fax - 1-856-589-6614
Contact: Jeffrey M. Toughill, President JMT4HISTIO@aol.com
www.histio.org

Human Papillomavirus

HPV

HPV Support Program
American Social Health Association
P.O. Box 13827
Research Triangle Park, NC 27709
Phone: (919) 361-8400
Web site: www.ashastd.org
Arizona HPV Support Group
7336 E. Shoeman Lane
Suite 110W
Scottsdale, AZ 85251
Phone: (480) 994-8330 or (800) 223-2159 - Hotline
North Florida HPV Support Group
North Florida Women's Health and Counseling
126 Salem Court, Suite B
Tallahassee, FL 32301
Phone: (850) 877-3183
Merrimack Valley HPV Support Group
Holy Family Hospital
70 East Street
Methuen, MA 01844
Phone: (978) 687-0156 x2432
Omaha HPV Support Group
c/o Planned Parenthood
4610 Dodge St.
Omaha, NE 68132
Phone: (402) 397-2739
Richland County HPV Support Group
PO Box 131
Mansfield, OH 44907
Phone: (419) 525-3075
Oklahoma City HPV Support Group
c/o Planned Parenthood of Central Oklahoma
619 N.W. 23rd Street
Oklahoma City, Oklahoma 73103
Phone: (405) 528-0221
Tri County HPV (Health & Counseling) Support Group
P.O. Box 1997
Mt. Pleasant, SC 29465
Phone: (843) 884-7333
Dallas/Ft. Worth Metroplex HPV Support Group
8215 Westchester, Suite 228
Dallas, TX 75225
Phone: (214) 363-6733
Richmond HPV Support Group
c/o Fan Free Clinic, Inc.
PO. Box 5669
1721 Hanover Avenue
Richmond, VA 23220
Phone: (804) 358-6343
Northcentral WV HPV Support Group
Monongalia County Health Department
453 Van Voorhis Road
Morgantown, WV 26505
Phone: (304) 598-5100
Seattle HPV Support Group
P.O. Box 31171
Seattle, WA 98103

Ichthyosis

Foundation for Ichthyosis & Related Skin Types
Suite G2
1364 Wales, PA. 19454
Phone: (800)545-3286 Fax: (215)619-0780
e-mail info@scalyskin.org
www.scalyskin.org

Klippel-Trenaunay Syndrome

K-T Syndrome Support Group
5404 Dundee Road
Edina, MN 55436
Contact: Judy Vessey, President
Phone: (952) 925-2596

Leprosy

Damien Dutton Society for Leprosy Aid, Inc.
616 Bedford Avenue
Bellmore, NY 11710
Phone: (516) 221-5829 Fax: (516) 221-5909

Lice

See Pediculosis

Lupus

Lupus Foundation of America, Inc
National Office
2000 L Street, NW Suite 710
Washington, DC 20036
Phone 1-800-558-0121, (Spanish) 1-800-558-0231
Fax 202-349-1156

Lymphomatoid Papulosis

(& other Ki-1 positive cutaneous lymphomas)

Lymphomatoid Papulosis Central Registry
Department of Pathology
Beth Israel Hospital
330 Brookline Avenue
Boston, MA 02215
Contact: Marshall E. Kadin, M.D.
Phone: (401) 624-2715 Fax: (617) 667-4533
E-mail: mkadin@bidmc.harvard.edu

Melanoma

See Skin Cancer

Muscular Dystrophy

Muscular Dystrophy Association (MDA)
3300 East Sunrise Drive
Tucson, AZ 85718
Phone: (800) 572-1717 Fax: (520) 529-5300
E-mail: mda@mdausa.org
Web site: www.mdausa.org

Neurofibromatosis

National Neurofibromatosis Foundation
95 Pine Street
16th Floor
New York, NY 10005
Phone: (212) 344-6633 or (800) 323-7938 Fax: (212) 747-0004
E-mail: NNFF@nf.org
Web site: www.nf.org

Nevi

Nevus Network
Congenital Nevus Support Group
PO Box 1981
Woodbridge, VA 22193
Phone: (703) 492-0253 Fax: (405) 377-3403
E-mail: nevusnet@bigfoot.com
Web site: www.nevusnetwork.org
Nevus Outreach, Inc.
600 SE Delaware Ave., Suite 200
Bartlesville, OK 74003
Phone: 1-877-426-3887 or 1-918-331-0595
Fax: 1-281-417-4020

Ostomy

United Ostomy Association, Inc.
19772 MacArthur Boulevard
Suite 200
Irvine, CA 92612-2405
Phone: (800) 826-0826
E-mail: info@uoa.org
Web site: www.uoa.org

Pediculosis

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

Pediatric Dermatology

The Society for Pediatric Dermatology
5422 North Bernard
Chicago, IL 60625
Phone: 773-583-9780 Fax: 773-583-9765
E-mail: Patrici107@aol.com
Web site: www.pedsderm.net

Plastic Surgery

American Society for Dermatologic Surgery (ASDS)
5550 Meadowbrook Drive, Suite 120
Rolling Meadows, IL 60008
Phone: 847-956-0900
Fax: 847-956-0999
Web site: www.aboutskinsurgery.com

Porphyria

American Porphyria Foundation
P.O. Box 22712
Houston, TX 77227
Contact: Desiree Lyon, Executive Director
Phone: (713) 266-9617
E-mail: porphyrus@juno.com
Web site: www.enterprise.net/apf/

Post Herpetic Neuralgia

Psoriasis

The International Psoriasis Council
3900 Junius Street, Suite 145
Dallas, Texas USA 75246
Phone: (212) 566-3477
Fax: (260) 818-2950
E-mail: info@psoriasiscouncil.org
Web site: http://www.psoriasiscouncil.org/
VZV Research Foundation
40 East 72nd Street
New York, NY 10021
Phone: (212) 472-3181
Fax: (212) 861-7033
E-mail: rtp@vzvFoundation.org
Web site: www.vzvFoundation.org
World Psoriasis Day
IFPA SECRETARIAT
R?kerigatan 19
SE-121 62 Johanneshov
SWEDEN
Phone: +46 8 556 109 14
Fax: +46 8 556 109 19
E-mail: IFPA Secretariat
Web site: http://www.worldpsoriasisday.com/

Progeria

International Progeria Registry
New York State Institute for Basic Research in
Developmental Disabilities
1050 Forest Hill Road
Staten Island, NY 10314
Contact: W. Ted Brown, M.D., Ph.D.
Phone: (718) 494-5333 Fax: (718) 494-4835
E-mail: wtbibr@aol.com

Pseudofolliculitis Barbae

Pseudofolliculitis Barbae Sufferers of America, Inc.
P.O. Box 3761
Port Arthur, TX 77643
Phone: (409) 982-2206 Fax: (409) 983-2103
Web site: www.pernet.net/~pfb/

Rare Disorders

National Organization for Rare Disorders
55 Kenosia Ave.
Danbury, CT 06813-1968
Phone: (203) 744-0100 Fax: (203) 798-2291
E-mail: orphan@rarediseases.org
Web site: www.rarediseases.org

Rosacea

National Rosacea Society
800 South Northwest Highway
Suite 200
Barrington, IL 60010
Contact: Suzanne Corr
Phone: (847) 382-8971 or (888) NO BLUSH Fax: (847) 382-5567
E-mail: rosaceas@aol.com
Web site: www.rosacea.org

Rheumatic Disease

The Road Back Foundation
4985 North Lake Hill Road
Delaware, OH 43015-9249
Contact: Patricia M. Ganger, President
Phone: (740) 881-5601
Web site: www.roadback.org

Sarcoidosis

National Sarcoidosis Resource Center
PO BOX 1593
Piscataway, NJ 08855-1593
Phone: (732) 699-0733 Fax: (732) 699-0882
E-mail: sandra@nsrc-global.net
Web site: www.nsrc-global.net

Scabies

See Pediculosis

Scleroderma

Scleroderma Research Foundation
220 Montgomery Street, Suite 1411
San Francisco, CA 94104
Phone 1-800-441-2873 or 1-415-834-9444
Fax- 1-415-834-9177

Scleroderma Foundation
300 Rosewood Dr., Suite 105
Danvers, MA 01923
Phone-1-800-722-4673 ext 10 or 1-978-463-5843
Fax 1-978-463-5809

Self Help

National Self-Help Clearinghouse
365 5th Avenue, Suite 3300
New York, NY 10016
Phone: (212) 817-1822
E-mail: info@selfhelpweb.org
Web site: www.selfhelpweb.org

Shingles

VZV Research Foundation
40 East 72nd Street
New York, NY 10021
Phone: (800) 472-VIRUS or (212) 472-3181
Fax: (212) 861-7033
E-mail: rtp@vzvFoundation.org
Web site: www.vzvFoundation.org

Skin Cancer

Skin Cancer Foundation
245 Fifth Avenue
Suite 1403
New York, NY 10016
Phone:(212) 725-5176 or (800) SKIN-490 Fax: (212) 725-5751
E-mail: info@skincancer.org
Web site: www.skincancer.org
American Melanoma Foundation
3914 Murphy Canyon Road, Suite A132
San Diego, CA 92123
Phone: (858) 277-4426
E-mail: sunsmartz@melanomafoundation.org
Web site: www.melanomafoundation.org

Coalition for Skin Cancer Prevention in Maryland
MedChi, The Maryland State Medical Society
1211 Cathedral Street
Baltimore, MD 21201
Phone: (410) 539-0872, ext. 340
Contact: Roberta Herbsta, Project Coordinator
E-mail: roberta@mail.medchi.org
Web site: www.SunGuardMan.org

BCCNS Life Support Network
P.O. Box 321
14606 West Park Street #201
Burton, Ohio 44021
Phone: (440) 635-0078
Fax: (440) 635-0078
Contact: Bud Caruso
E-mail: info@bccns.org
Web site: www.bccns.org

Melanoma International Foundation
250 Mapleflower Road
Glenmoore, PA 19343
Phone/Fax: (610) 942-3432
Patient & Family Hotline: (866) 463-6663
E-mail: info@melanomaintl.org
Web site: www.melanomaintl.org
Social Health
American Social Health Association
P.O. Box 13827
Research Triangle Park, NC 27709
Contact: Linda Alexander, PhD, FAAN, Executive Director
Phone: (919) 361-8400 Fax: (919) 361-8425
Web site: www.ashastd.org

Skin Conditions

SkinHelp
SkinHelp contains over 90 articles all written by our team of experts and we add around 10 new articles each month.
Email SkinHelp
Website SkinHelp.co.uk

Stevens-Johnson Syndrome

See erythema multiforme

Surgery

American Society for Dermatologic Surgery
5550 Meadowbrook Drive, Suite 120
Rolling Meadows, IL 60008
Phone: (847)956-0900 Fax (847)956-0999
email info@asds.net
Web site: www.asds-net.org

Tuberous

Tuberous Sclerosis Alliance
801 Roeder Rd., Ste 750
Silver Spring, MD 20910
Phone-1-800-225-6872
1-301-562-9890
Fax 1-301-562-9870

Vitiligo

National Vitiligo Foundation
PO Box 6117
Tyler, TX 75711
Phone -903-595-3713
e-mail info@vnfl.org

Vulvodynia

National Vulvodynia Association
P.O. Box 4491
Silver Spring, MD 20914-4491
Phone: (301) 299-0775 Fax: (301) 299-3999
Web site: www.nva.org
Xeroderma Pigmentosum
Xeroderma Pigmentosum (XP) Family Support
Phone: 1-916-628-3814
Web site: http://xpfamilysupport.com/