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ALBINISMO
National Organization for Albinism and Hypopigmentation
PO Box 959
East Hampstead, NH 03826-0959
Phone: (215) 545-2322 or (800) 473-2310
www.albinism.org
ALOPECIA
AREATA
Alopecia Areata National Alopecia Areata Foundation
710 "C" Street
Suite 11
San Rafael, CA 94901
Contact: Vicki Kalabokes, Chief Executive Officer
Phone: (415) 456-4644 Fax: (415) 456-4274
E-mail: info@naaf.org
Web page: : www.naaf.org
ANEMIA DE FANCONI
Anemia Fanconi's Anemia International Registry
Laboratory for Investigative Dermatology
Rockefeller University
1230 York Avenue
New York, NY 10021-6399
Phone: (212) 327-8862 Fax: (212) 327-8232
ATAXIA -TELANGIECTASIA
Ataxia-Telangiectasia Ataxia-Telangiectasia with Cancer
c/o Immunodeficiency Cancer Registry
Box 261 Mayo, University of Minnesota
420 Delaware Street S.E.
Minneapolis, MN 55455
Contact: Alexandra Filipovich, M.D., Director
Fax: (612) 624-7686
BEHCET
Behcet's American Behcet's Disease Association
PO Box 280240
Memphis, TN 38168-0240
Phone: 800-7BEHCETS
Web page: www.behcets.com
CANCER
National Cancer Institute
Office of Cancer Communications
9000 Rockville Pike
Building 31, Room 10-A-31
Bethesda, MD 20892
Contact: Paul Van Nevel, Associate DirectorPhone: (301) 496-6631
Fax: (301) 402-4945
Web page: www.nci.nih.gov
CANCER DE PIEL
Skin Cancer Skin Cancer Foundation
245 Fifth Avenue
Suite 1403
New York, NY 10016
Phone:(212) 725-5176 Fax: (212) 725-5751
E-mail: info@skincancer.org
American
Melanoma Foundation
Biologics Program
USC Cancer Center
9500 Gilman Drive
PO Box 0658
La Jolla, CA 92093-0658
Phone: (619) 534-3840
DERMATITIS HERPETIFORMIS
Dermatitis Herptiformis American Celiac Society
58 Musano Court
West Orange, NJ 07052
Phone: (973) 325-8837 Fax: (973) 669-8808
Celiac
Disease Foundation
3251 Ventura Boulevard
Number 3
Studio City, CA 91604-1838
Phone: (818) 990-2354 Fax: (818) 990-2379
Web page: laran.waisman.wisc.edu/fv/www/lib_celi.htm
DERMATOLOGIA PEDIATRICA
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: www.spdnet.org
Pemphigus
DERMATOMIOSITIS
Dermatomyositis
Muscular Dystrophy Association (MDA)
3300 East Sunrise Drive
Tucson, AZ 85718
Phone: (800) 572-1717 Fax: (601) 529-5300
E-mail: mda@mdausa.org
Web page: www.mdausa.org
DERMATOPATOLOGIA
Dermatopathology Dermatopathology Foundation
P.O. Box 377
Canton, MA 02021
Contact: Wendy Christison, Administrator
Phone:(617) 821-0648 Fax: (617) 821-6586
DISPLASIA ECTODERMICA
Ectodermal Dysplasia National Foundation for Ectodermal Dysplasia
410 East Main Street
PO Box 114
Mascoutah, IL 62258
Contact: Mary Kaye Richter, Executive Director
Phone: (618) 566-2020 Fax: (618) 566-4718
Web page: www.nfed.org
Email: nfed1@aol.com
ECZEMA
Eczema The National Eczema Society
163 Eversholt Street
London NW1 1BU
UNITED KINGDOM
Phone: (44) 71-388-4097 Fax: (44) 71-388-5882
Web page: www.eczema.org
EPIDERMODISPLASIA VERRUCIFORMIS
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
EPIDERMOLISIS
BULOSA
Epidermolysis Bullosa Epidermolysis Bullosa Research
Association of America, Inc. (DebRA)
40 Rector Street, Suite 1403
New York, NY 10006
Contact: Jean Campbell. Executive Director
Phone: (212) 513-4090 Fax: (212) 513-4099
E-mail: jcampbell.debra@exario.net
Web page: www.debra.org
ERITEMA
MULTIFORME, STEVENS JOHNSON´S
Stevens Johnson's Syndrome Stevens Johnson's Syndrome Foundation
9285 N. Utica Street
Westminster, CO 80030
Phone: (303) 430-9559
Fax: (303) 487-9359
E-mail: sjsupport@aol.com
Web page: http://members.aol.com/sjsupport
ESCLERODERMIA
Scleroderma Info Exchange, Inc.
150 Hines Farm Road
Cranston, RI 02921
Contact: Harlan Hersey, Executive Director
Phone: (401) 943-3909
Scleroderma
Research Foundation
2320 Bath Street
Suite 315
Santa Barbara, CA 93105
Phone: (800) 441-CURE or (805) 563-9133 Fax: (805) 563-2402
Web page: www.srfcure.org
Email: srf@srfcure.org
United
Scleroderma Foundation, Inc.
(now merged with Sclerodema Federation)
89 Newbury St, Ste 201
Danvers, MA 01923
Phone:(978) 750-4499 or (800) 722-HOPE Fax: (978) 750-9902
Web page: www.scleroderma.com
E-mail: erotolo@scleroderma.org
ESCLEROSIS TUBEROSA
Tuberous Sclerosis Alliance
801 Roeder Road, Suite 750
Silver Springs, MD 20910
Phone: 301-562-9890 or 800-225-6872 Fax: 301-562-9870
Web page: www.tsalliance.org
ENFERMEDADES GENETICAS
Genetic Disease Alliance of Genetics Support Groups
4301 Connecticut Avenue, NW
Suite 404
Washington, DE 20008
Phone: (202) 966-5557 Fax: (202) 966-8553
Helpline: (800) 336-GENE
E-mail: alliance@capaccess.org
Web page: http://medhlp.netusa.net/agsg/agsgsup.htm
HEMOCROMATOSIS
Hemochromatosis Research Foundation
P.O. Box 8569
Albany, NY 12208
Phone: (518) 489-0972 Fax: (518) 489-0227
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 page: http://www.ashastd.org
HISTIOCITOSIS
Histiocytosis Association of America, Inc.
302 N. Broadway
Pitman, NJ 08071
Phone: (800) 548-2758 Fax: (609) 589-6614
ICTIOSIS
Ichthyosis Foundation for Ichthyosis & Related Skin Types, Inc.
(F.I.R.S.T.)
650 N. Cannon Avenue, Suite 17
Lansdale, PA 19446
Phone:(215) 631-1411 or (800) 545-3286 Fax: (215) 631-1413
E-mail: info@scalyskin.org
Web page: www.scalyskin.org
National
Registry for Ichthyosis & Related Skin Disorders
University of Washington
Box 356524
Seattle, WA 98195
Phone:(800) 595-1265 or (206) 616-3179 Fax: (206) 616-4302
E-mail: ichreg@u.washington.edu
LEPRA (ENFERMEDAD DE HANSEN)
Leprosy Damien Dutton Society for Leprosy Aid, Inc.
616 Bedford Avenue
Bellmore, NY 11710
Phone: (516) 221-5829
LUPUS
Lupus Foundation of America, Inc.
1300 Piccard Drive
Suite 200
Rockville, MD 20850-4303
Contact: Deb Blom, Field Service Manager
Phone: (301) 670-9292 or (800) 558-0121 Fax: (301) 670-9486
E-mail: LupusInfo@aol.com
Web page: www.lupus.org
Contact:
Marshall E. Kadin, M.D.
Phone: (617) 667-5886 Fax: (617) 667-4533
E-mail: mkadin@bidmc.harvard.edu
MARCAS
DE NACIMIENTO
Birthmarks The Hemangioma and Vascular Birthmark Foundation
P.O. Box 106
Latham, N.Y. 12110
Contact: Linda Shannon, Executive Director
Phone: (518) 782-9637
E-mail: hvbf@aol.com
or info@birthmark.org
Web page: http://www.birthmark.org
MANCHAS EN VINO DE OPORTO
Port Wine Stain National Congenital Port Wine Stain Foundation
125 East 63rd Street
New York, NY 10021
Contact: Janet O'Kane
Phone:(516) 867-5137 Fax: (516) 869-1278
MELANOMA
ver cancer de piel.
MYCOSIS FUNGOIDES
Mycosis Fungoides Foundation
Box 374
Birmingham, MI 48012-0374
Phone: (248) 644-9014 Fax: (248) 644-9014
Web: www.mffoundation.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@aol.com
Web page:www. nf.org
NEURALGIA POSTHERPETICA
VZV Research Foundation
36 East 72nd Street
(PHN) New York, NY 10021
Phone: (212) 472-3181
NEVUS (LUNARES)
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 page: www.nevusnetwork.org
PAPULOSIS
LINFOMATOIDE
Lymphomatoid Papulosis Central Registry
Department of Pathology
Beth Israel Hospital
330 Brookline Avenue
Boston, MA 02215
PAPILOMA VIRUS HUMANO
Human Papillomavirus HPV Support Program
American Social Health Association
P.O. Box 13827
Research Triangle Park, NC 27709
Phone: (919) 361-8400
Web page: www.ashastd.org
PEDICULOSIS
National Pediculosis Association
P.O. Box 610189
Newton, MA 02161-0189
Phone: (617) 449-6487 Fax: (617) 449-8129
PENFIGO
National Pempigus Foundation
PO Box 9606
Berkeley, CA 94709-0606
Phone: (510) 527-4970 Fax: (510) 527-8497
E-mail: Pvnews@aol.com
Web: www.pemphigus.org
PORFIRIA
American Porphyria Foundation
P.O. Box 22712
Houston, TX 77227
Contact: Desiree Lyon, Executive Director
Phone: (713) 871-1565 Fax: (713) 871-1788
E-mail: porphyrus@juno.com
Web page: www.enterprise.net/apf/
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) 494-1026
PSEUDOXANTHOMA ELASTICUM
National Association for Pseudoxanthoma Elasticum
3500 East 12th Avenue
Denver, CO 80206
Contact: Al Ferrari
Phone: (303) 355-3866
FAX: (303) 355-3859
E-Mail: pxenape@estreet.com
Website: www.napxe.org
PSEUDOFOLLICULITIS DE LA BARBA
Pseudofolliculitis Barbae Sufferers of America, Inc.
P.O. Box 3761
Port Arthur, TX 77643
Phone: (409) 982-2206 Fax: (409) 983-2103
Web page: www.pernet.net/~pfb/
PSORIASIS
International Federation of Psoriasis Associations
6600 SW 92nd Avenue
Suite 300
Portland, OR 97223-7195
Phone: (503) 244-7404 Fax: (503) 245-0626
E-mail: marcy@npfusa.org
National Psoriasis Foundation
6600 S.W. 92nd Avenue
Suite 300
Portland, OR 97223-7195
Contact: Gail M. Zimmerman, President and CEO
Phone: (503) 244-7404 or (800) 723-9166Fax: (503) 245-0626
e-mail: Getinfo@npfusa.org
Web page: www.psoriasis.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 page: www.rosacea.org
SIDA
AIDS Hotline
Phone: (800) 243-AIDS (Illinois only)
Web page: www.hivpositive.com/f-Resources/f-15A-Hotlines/
15-StateHotlines.html
Pediatric
AIDS Foundation
1311 Colorado Avenue
Santa Monica, CA 90404
Phone: (310) 395-9051 Fax: (310) 395-5149
SINDROME DE MARFAN
Marfan's Syndrome National Marfan Foundation
382 Main Street
Port Washington, NY 11050
Phone: (516) 883-8712 or (800) 8-MARFAN Fax: (516) 883-8040
Web page: www.marfan.org
Email: staff@marfan.org
SINDROME DE COCKAYNE
Cockayne's Syndrome Share & Care
c/o Teresa Wall
PO Box 552
Stanleytown, VA 24168
Phone: (540) 629 - 2369
SINDROME DE BLOOM
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
SINDROME DE EHLERS DANLOS
Ehlers Danlos Syndrome Ehlers Danlos National Foundation
6399 Wilshire Blvd., Ste 203
Los Angeles, CA 90048
Phone: (213) 651-3038
E-mail: loosejoint@aol.co
Web page: www.ednf.org
SINDROME DE KLIPPEL-TRENAUNAY KT Syndrome Support Group
4610 Wooddale Avenue
Edina, MN 55424
Contact: Judy Vessey, President
Phone: (612) 925-2596
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 page: www.nsrc-global.net
SINDROME
DE SJOGREN
National Sjogren's Syndrome Association
5815 North Black Canyon Highway
Suite 103
Phoenix, AZ 85015-2200
Phone: (602) 433-9844 FAX: (602) 433-9838
E-mail: nssa@aol.com
Web page: www.sjogrens.org
SINDROME DE STURGE - WEBER
Sturge-Weber Foundation
Post Office Box 418
Mt. Freedom, NJ 07970
Phone: (973) 895-4445 or (800) 441-2873 Fax: (973) 895-4846
E-mail: swfoffice@aol.com
Web page: www.sturge-weber.com
VARICELA
Chicken Pox VZV Research Foundation
40 East 72nd Street
New York, NY 10021
Phone: (212) 472-3181
VITILIGO
National Organization for Albinism & Hypopigmentation
1530 Locust Street #29
Philadelphia, PA 19102-4415
(215) 545-2322 x128; or (800) 473-2330
E-mail: webmaster@albinism.org
Web page: www.albinism.org
National Vitiligo Foundation
611 South Fleishel
Tyler, TX 75701
Phone: (903) 531-0074 Fax: (903) 531-1234
E-mail: vitiligo@trimofran.org
Web page: www.vitiligofoundation.org
VULVODINIA
National Vulvodynia Association
P.O. Box 4491
Silver Spring, MD 20914-4491
Phone: (301) 299-0775 Fax: (301) 299-3999
E-mail: mate@graphcom.com
Web page: www.nva.org
XERODERMA PIGMENTOSO
Xeroderma Pigmentosum Registry
Department of Pathology
UMDNJ-New Jersey Medical School
185 South Orange Avenue
Newark, NJ 07103
Contact: W. Clark Lambert, M.D., Associate Professor
Phone:(973) 456-4405
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LOS "TOP TEN" MAS UTILES EN LA RED...para
información sobre salud, seleccionados por The Medical Library
Association, basados en: credibilidad, patrocinio, autores, contenido,
audiencia, circulación, divulgación, propósito,
vínculo, diseño, interactividad y contradicciones.
Mayo 2003
Cancer.gov
http://www.cancer.gov/
Centers for Disease Control and Prevention (CDC)
http://www.cdc.gov
familydoctor.org
http://www.familydoctor.org/
healthfinder
http://www.healthfinder.gov
HIV InSite
http://hivinsite.ucsf.edu
Kids Health
http://www.kidshealth.org/
Mayo Clinic
http://www.mayohealth.org
MEDEM: an information partnership of medical Societies
http://medem.com/MedLB/medlib_entry.cfm
MEDLINEplus
http://medlineplus.gov
NOAH: New York Online Access to Health
http://www.noah-health.org
Source: The Medical Library Association -
http://www.mlanet.org/resources/medspeak/topten.html
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