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Foundations, Institutes and Support Groups

ACNE	VIVANT, INC (formerly Acne Research Institute) 1236 Somerset Lane Newport Beach, CA 92660 Contact: James E. Fulton, Jr., M.D., Founder Phone: (714)-722-1805 Fax: (714)-722-6826
AIDS	AIDS HOTLINE Phone: (800) 243-AIDS (Illinois only) American Foundation for AIDS Research 733 3rd Avenue 12th Floor New York, NY 10017 Phone: (212) 682-7440 Fax: (212) 682-9812 The Body An AIDS and HIV Information Resource Center for Disease Control National AIDS Information Clearinghouse Phone: (800) 458-5231 Gay Men's Health Crisis 119 West 24th Street 6th Floor New York, NY 10011 Phone: (212) 807-6655 Fax: (212) 337-3656 HIV Anonymous Testing & Counseling Howard Brown Health Center 945 West George Street Chicago, IL 60657 Phone: (312) 871-5777 Fax: (312) 871-5843 National HIV/AIDS Hotline Center for Disease Control Phone: (800) 342-AIDS Pediatric AIDS Foundation 1311 Colorado Avenue Santa Monica, CA 90404 Phone: (310) 395-9051 Fax: (310) 395-5149 People with AIDS Coalition 50 West 17th Street 8th Floor New York, NY 10011 Phone: (800) 828-3280 Fax: (212) 647-1419 California AIDS Foundation P. O. Box 426182 San Francisco, CA 94142-6182 Phone: (415) 863-AIDS or (800) 367-2437 (Northern CA only)
ALBINISM	National Organization for Albinism and Hypopigmentation 1530 Locust Street Box 29 Philadelphia, PA 19102 Phone: (215) 545-2322 or (800) 473-2310 e-mail: noah@albinism.org
ALOPECIA AREATA	National Alopecia Areata Foundation 710 "C" Street Suite 11 San Rafael, CA 94901 Contact: Ms. Vicki Kalabokes, Chief Executive Officer Phone: (415) 456-4644 Fax: (415) 456-4274 Web page:www.seber.u.washington.edu/~dvictor/natl.html e-mail: naaf@compuserve.com
ANEMIA	Fanconi's Anemia International Registry Laboratory for Investigative Dermatology Rockefeller University 1230 York Avenue New York, NY 10021-6399 Phone: (212) 327-8232 Fax: (212) 327-8232
ARTHRITIS	Arthritis Foundation Post Office Box 1900 Atlanta, GA 30326 Contact: Arthur I. Grayzel, M.D., Senior VicePresident Phone: (800) 283-7800 Fax: (404) 872-0457 Arthritis Foundation Post Office Box 1900 Atlanta, GA 30326 Contact: Arthur I. Grayzel, M.D., Senior VicePresident Phone: (800) 283-7800 Fax: (404) 872-0457
ATAXIA-TEL- ANGIECTASIA	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 National Ataxia Foundation 2600 Fernbrook Lane Suite 119 Minneapolis, MN 55447-4752 Contact: Donna Gruetzmacher, Executive Director Phone: (612) 553-0020 Fax: (612) 553-0167 e-mail: naf@mr.net
BASAL CELL CARCINOMA	See Skin Cancer
BEHCET'S	American Behcet's Foundation, Inc. P. O. Box 54063 Minneapolis, MN 55454-0063 Phone: (800) 723-4238
BIRTHMARKS	The Hemangioma and Vascular Birthmark Foundation P. O. Box 106 Latham, NY 12110 Contact: Linda Shannon, Executive Director Phone: (518) 782-637 e-mail: hvbf@aol.com or infor@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
CANCER	(also see Skin Cancer & Ataxia Telangiectasia) American Cancer Society 625 North Court Palatine, IL 60067 Phone: (800) ACS-2345 National Cancer Institute Office of Cancer Communications 9000 Rockville Pike Building 31, Room 10-A-31 Bethesda, MD 20892 Contact: Paul Van Nevel, Associate Director Phone: (301) 496-6631 Fax: (301) 402-4945 National Coalition for Cancer Survivorship 1010 Wayne Avenue Suite 505 Silver Spring, MD 20910-5600 Phone: (888) YES-NCCS or (888) 937-6227 Fax: (301) 565-9670 e-mail: info@cansearch.org
CHICKEN POX	VZV Research Foundation 40 East 72nd Street New York, NY 10021 Phone: (212) 472-3181
COCKAYNE'S SYNDROME	Share & Care c/o Teresa Wall P O Box 552 Stanleytown, VA 24168 Phone: (540) 629-2369
DARIER-WHITE SYNDROME	See Ichthyosis
DERMATITIS HERPTIFORMIS	American Celiac Society 58 Musano Court West Orange, NJ 07052 Phone: (973) 325-8837 Fax: (973) 669-8808 Celiac Disease Foundation 13251 Ventura Boulevard Number 3 Studio City, CA 91604-1838 Phone: (818) 990-2354 Fax: (818) 990-2379 Celiac Sprue Association/USA P. O. Box 31700 Omaha, NE 68131 Phone: (402) 558-0600 Gluten Intolerance Group of North America 15110 10th Avenue, S.W., Suite A Seattle, WA 98166 Contact: Cynthia Kupper, RD, CDE, CEO Phone: (206) 246-6652 Fax: (206) 236-6531 e-mail: gig@accessone.com
DERMATO- MYOSITIS	Muscular Dystrophy Association (MDA) 3300 East Sunrise Drive Tucson, AZ 85718 Phone: (800) 572-1717 Fax: (601) 529-5300 E-mail: mda@mdausa.org
DERMATO-PATHOLOGY	Dermatopathology Foundation PO Box 377 Canton, MA 02021 Contact: Wendy Christison, Administartor Phone: (617) 821-0648 Fax: (617) 821-6586
DYSAUTONOMIA	Dysautonomia Foundation, Inc. 20 East 46th Street - Suite 302 New York, NY 10017 Phone: (212) 949-6644 Fax: (212) 682-7625
DYSTROPHIC	Dystrophic Epidermolysis Bullosa Research Association of America, Inc. (DebRA) 40 Rector Street, 8th Floor New York, NY 10006 Phone: (212) 513-4090 Fax: (212) 513-4099 e-mail: debraorg@ix.netcom.com
ECTODERMAL	National Foundation for Ectodermal Dysplasia 410 East Main P O Box 114 Mascoutah, IL 62258 Contact: Ms. Mary Kaye Richter, Executive Director Phone: (618) 566-2020 Fax: (618) 566-4718 e-mail: nfed@aol.com
ECZEMA	The National Eczema Society 163 Eversholt Street London NW1 1BU UNITED KINGDOM Phone: (44) 71-388-4097 Fax: (44) 71-388-5882
	The National Eczema Association for Science & Education (N.E.A.S.E.) 1221 S. W. Yamhill Suite 303 Portland, OR 97205 Robert O. McAlister, Ph.D., Executive Director Phone: (503) 228-4430 Fax: (503) 273-8778
EHLERS DANLOS SYNDROME	Ehlers Danlos National Foundation P O Box 35177 Los Angeles, CA 90035 Phone: (213) 651-3038 FAX: (213) 651-1366 Ms. Linda Neumann-Potash e-mail: loosejoint@aol.com
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 National Epidermolysis Bullosa Registry University of North Carolina-Chapel Hill Department of Dermatology Building #1 - CB #3369 Bolin Heights Chapel Hill, NC 27514-3369 Contact: Jo-David Fine, M.D., Principal Investigator Phone: (919) 966-3321 E-mail: jdfine@med.unc.edu Contact: Lorraine Johnson, R.N., Coordinator Phone: (919) 966-2007 Fax: (919) 966-7080 e-mail: ljohnson@med.unc.edu Epidermolysis Bullosa Research Association of America (D.E.B.R.A.) 40 Rector Street 14th Floor New York, NY 10006 Phone: (212) 513-4099 Fax: (212) 513-4099 Ms. Miriam Feder, Executive Director e-mail: debra.org@erols.com
ERYTHEMA MULTIFORME (Stevens Johnson's Syndrome)	Stevens Johnson's Syndrome Support Group The Julie Foundation for Allergic Drug Reactions 9285 Utica Street Westminister, CO 80030 Phone: (303) 487-9369 Fax: (303) 487-9359 e-mail: sjsupport@aol.com
FANCONI'S ANEMIA	See Anemia
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
GENITAL WARTS	See Social Health
GLUTEN INTOLERANCE	See Dermatitis Herpetiformis
HANSEN'S DISEASE	See Leprosy
HEMANGIOMAS	See Birthmarks
HEMO- CHROMATOSIS	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: Melissa Peacock, Program Coordinator Phone: (800) 230-6039 (National Herpes Hotline)
HISTIO- CYTOSIS	Histiocytosis Association of America, Inc. 302 N. Broadway Pitman, NJ 08071 Phone: (800) 548-2758 Fax: (609) 589-6614
HUMAN PAPILLOMA VIRUS	HPV Support Program American Social Health Association P. O. Box 13827 Research Triangle Park, NC 27709 Phone: (919) 361-8400
Arizona	Arizona HPV Support Group 7336 E. Shoeman Lane Suite 110W Scottsdale, AZ 85251 Phone: (602) 994-8330 or (800) 223-2159 - Hotline
California	Los Angeles Area HPV Support Group 820 Manhattan Avenue Number 102 Manhattan Beach, CA 90266 Contact: Jo Ann Woodward Phone: (310) 798-2273
Florida	North Florida HPV Support Group North Florida Women's Health and Counseling 126 Salem Court, Suite B Tallahassee, FL 32301 Phone: (904) 877-3183
Massachusetts	Merrimack Valley HPV Support Group Holy Family Hospital 70 East Street Methuen, MA 01844 Phone: (508) 687-0156 x 2432
Nebraska	Omaha HPV Support Group c/o Planned Parenthood 4610 Dodge Street Omaha, NE 68132 Phone: (402) 397-2739
Ohio	Cincinnati HPV Support Group P. O. Box 12407 Cincinnati, Ohio 45212-0407 Phone: (513) 357-7300 Richland County HPV Support Group P. O. Box 3881 Mansfield, Ohio 44907 Phone: (419) 525-3075
Oklahoma	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
South Carolina	Tri County HPV(Health & Counseling) Support Group P. O. Box 1997 Mt. Pleasant, SC 29465 Phone: (803) 884-7333
Texas	Dallas/Ft. Worth Metroplex HPV Support Group 8215 Westchester, Suite 228 Dallas, TX 75225 Phone: (214) 363-6733
Virginia	Richmond HPV Support Group c/o Fan Free Clinic, Inc. P. O. Box 5669 1721 Hanover Avenue Richmond, VA 23220 Phone: (804) 358-6343
West Virginia	Northcentral WV HPV Support Group Monongalia County Health Department 453 Van Voorhis Road Morgantown, WV 26505 Phone: (304) 598-5100
Washington	Seattle HPV Support Group P. O. Box 31171 Seattle, WA 98103 Phone: (206) 619-7190
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 Ms. Jean Pickford, Executive Director e-mail: ichthyosis@aol.com 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 Web page: http://weber.u.washington.edu/~geoff/ichthyosis.registry
INCONTINENTIA PIGMENTI	See Ectodermal Dysplasia
KLIPPEL- TRENAUNAY SYNDROME	K-T Syndrome Support Group 4610 Wooddale Avenue Edina, MN 55424 Contact: Judy Vessey, President Phone: (612) 925-2596
LEPROSY	Damien Dutton Society for Leprosy Aid, Inc. 616 Bedford Avenue Bellmore, NY 11710 Phone: (516) 221-5829 Gillis W. Long Hansen's Disease Center 5445 Point Clair Road Carville, LA 70721 Phone: (504) 642-4700 Fax: (504) 642-4729
LICE	See Pediculosis
LUPUS	American Lupus Society 3914 Del Amo Boulevard Suite 922 Torrance, CA 90503 Phone: (213) 542-8891 or (800) 331-9802 Bay Area Lupus Foundation 2635 North First Street Suite 206 San Jose, CA 95134 Phone: (800) 523-3363 Fax: (408) 954-8129 Lupus Foundation of America, Inc. 1300 Piccard Drive Suite 200 Rockville, MD 20850-4303 Contact: Deb Blom, Interim Executive Director Phone: (301) 670-9292 or (800) 558-0121 Fax: (301) 670-9486 Massachussetts Chapter 425 Watertown Street Newton, MA 02158 Contact: Mimi LaCamera, Executive Director Phone: (617) 332-9014
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: (617) 667-5886 Fax: (617) 667-4533 e-mail: mkadin@bidmc.harvard.edu
MARFAN' S SYNDROME	National Marfan Foundation 382 Main Street Port Washington, NY 11050 Phone: (516) 883-8712 Fax: (516) 883-8040 Ms. Carolyn Levering, Executive Director e-mail: staff@marfan.org
MELANOMA	See Skin Cancer
MUSCULAR DYSTROPHY	Muscular Dystrophy Association 342 Madison Avenue Room 1426 New York, NY 10173 Phone: (212) 557-8450 Fax: (212) 986-8327
NEURO- FIBROMATOSIS	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: nnf@aol.com
NEVI	Nevus Network Congenital Nevus Support Group P. O. Box 1981 Woodbridge, VA 22193 Phone: (703) 492-0253 Fax: (405) 377-3403 Nevus Outreach, Inc. 1616 Alpha Street Lansing, MI 48910 Phone: (877) 426-3887 Fax: (515) 684-0953 Mr. Kevin Williams, President e-mail: infor@nevus.org
OSTOMY	United Ostomy Association 19772 MacArthur Boulevard Suite 200 Irvine, CA 92612-2405 Phone: (714) 660-8624 or (800) 826-0826 Fax: (714) 660-9262 e-mail: uoa@deltanet.com
PATIENT ADVOCATES	Coalition of Patient Advocates 710 "C" Street Suite 11 San Rafael, CA 94901 Contact: Vicki Kalabokes, Chief Executive Officer Phone: (415) 456-4644 Fax: (415) 445-4274
PEDICULOSIS	National Pediculosis Association P. O. Box 610189 Newton, MA 02161-0189 Phone: (617) 449-6487 Fax: (617) 449-8129
PEMPHIGUS	National Pemphigus Foundation P. O. Box 9606 Berkeley, CA 94709-0606 Phone: (510) 527-4970 Ms. Janet Segall e-mail: Prnews@aol.com
PLASTIC SURGERY	Plastic Surgery Research Foundation PO Box 23220 SanDiego, CA 92193 Contact: Michelle M. Freeland Phone: (619) 467-9010
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
PORPHYRIA	American Porphyria Foundation P. O. Box 22712 Houston, TX 77227 Contact: Desiree Lyon, Executive Director Phone: (713) 266-9617 Fax: (713) 871-1788 e-mail: porphyrus@juno.com
POST HERPETIC NEURALGIA (PHN)	VZV Research Foundation 36 East 72nd Street New York, NY 10021 Phone: (212) 472-3181
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
PSEUDOXAN- THOMA ELASTICUM	National Association for Pseudoxanthoma Elasticum 3500 East 12th Avenue Denver, CO 80206 Phone: (303) 355-3866 Fax: (303) 355-3859 Mr. Al Ferrari, President e-mail: nape@napenet.org
PSEUDO- FOLLICULITIS BARBAE	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	Canadian Psoriasis Foundation 1306 Wellington Street, Suite 500-A Ottawa, ON K1Y 3B2 CANADA Phone: (613) 728-4000 or (800) 265-0926 Fax: (613) 728-8913 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: march@npfusa.org National Psoriasis Foundation 6600 S.W.92nd Avenue, Suite 300 Portland, OR 97223-7195 Contact: Gail M. Zimmerman, Executive Director Phone: (503) 244-7404 Fax: (503) 245-0626 e-mail: getinfo@npfusa.org Psoriasis Research Institue 600 Town & Country Village Palto Alto, CA 94301 Phone: (415) 326-1848 Fax: (415) 326-1262 Psoriasis Society of Canada National Office P. O. Box 25015 Halifax, NS B3M 4H4 CANADA Contact: Judy Misner, Founder Phone: (902) 443-8680 Fax: (902) 457-1664
RARE DISORDERS	National Organization for Rare Disorders P. O. Box 8923 New Fiarfield, CT 06812 Contact: Abbey S. Meyers, Executive Director Phone: (203) 746-6518 or (800) 999-6673 Fax: (203) 746-6481 Web page: www.pcnet.com/~orphan/
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
RHEUMATIC DISEASE	The Road Back Foundation 4985 North Lake Hill Road Delaware, OH 43015-9249 Contact: Patricia M. Ganger, President Phone: (740) 881-5601
SCARCOIDOSIS	National Scarcoidosis Resource Center P. O. Box 1593 Piscataway, NJ 08855-1593 Phone: (732) 699-0733 Fax: (732) 699-0882 e-mail: sandra@nsrc-global.net
SCABIES	See Pediculosis
SCLERODERMA	Scleroderma Info Exchange, Inc. 150 Hines Farm Road Cranston, RI 02921 Contact: Harland Hersey, Executive Director Phone: (401) 943-3909 Scleroderma Research Foundation Pueblo Medical Commons 2320 Bath Street Suite 307 Santa Barbara, CA 93105 Phone: (800) 441-CURE United Scleroderma Foundation, Inc. (now merged with Sclerodema Federation) 89 Newbury St, Suite 201 Danvers, MA 01923-1075 Phone: (978) 750-4499 or (800) 422-1113 Fax: (978) 750-9902 Mr. Karl Kastorf, Executive Director e-mail: sclerofed@aol.com or outreach@aol.com
SELF HELP	National Self-Help Clearinghouse 25 West 43rd Street Room 620 New York, NY 10036 Phone: (212) 354-8525 Fax: (212) 642-1956 e-mail: info@selfhelpueb.org
SHINGLES	VZV Research Foundation 40 East 72nd Street New York, NY 10021 Phone: (212) 472-3181
SJOGREN'S SYNDROME	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 Sjogren's Syndrome Foundation, Inc. 333 N. Broadway, Suite 2000 Jericho, NY 11753 Phone: (516) 933-6365 Fax: (516) 933-6368 Ms. Alexis Stegemann, Executive Director e-mail: ssf@mail.idt.net
SKIN (Research & Education for All Skin Disorders)	American Skin Association, Inc. 150 East 58th Street 3rd Floor New York, NY 10155-0002 Phone: (212) 753-8260 Fax: (212) 688-6547 Ms. Joyce Weidler e-mail: AmericanSkin@compuserve.com
SKIN CANCER	Skin Cancer Foundation 245 Fifth Avenue Suite 1403 New York, NY 10016 Phone: (212) 725-5176 Fax: (212) 725-5751 American Melanoma Foundation Biologics Program USC Cancer Center 9500 Gilman Drive P. O. Box 0658 La Jolla, CA 92093-0658 Phone: (619) 534-3840 BCCNS/Gorlin Syndrome Patient Advocate Bud Caruso 3044 Peoria Steger, IL 60475 Phone: (708) 756-3410 Fax: (708) 481-5134 e-mail: Souldansur@aol.com
SOCIAL HEALTH	American Social Health Association P. O. Box 13827-W Research Triangle Park, NC 27709 Contact: Linda Alexander, Ph.D., FANN, Executive Director Phone: (919) 361-8400 Fax: (919) 361-8425
STURGE-WEBER SYNDROME	Sturge-Weber Foundation Post Office Box 418 Mt. Freedom, NJ 07970 Phone: (201) 895-4445 e-mail: SWF@pobox.com
TUBEROUS SCLEROSIS	National Tuberous Sclerosis Association 8181 Professional Place, Suite 110 Landover, MD 20785-2226 Phone: (800) 225-6872 Fax: (301) 459-0394 e-mail: vicky.whittemore@ntsa.org
VENEREAL DISEASE	See Social Health
VITILIGO	National Organization for Albinism & Hypopigmentation 1530 Locust Street #29 Philadelphia, PA 19102-4415 Phone: (215) 545-2322 x 128; or (800) 473-2330 e-mail: webmaster@albinism.org National Vitiligo Foundation 611 S. Fleishel Avenue Tyler, TX 75701 Phone: (903) 531-0074 Fax: (903) 525-1234 e-mail: 73071.33@compuserve.com Web page: www.nvfi.org
VULVODYNIA	National Vulvodynia Association P. O. Box 4491 Silver Spring, MD 20914 Phone: (301) 299-0775 Fax: (301) 299-3999 e-mail: matenva@graphcom.com
XERODERMA PIGMENTOSUM	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 Xeroderma Pigmentosum Society P. O. Box 4759 Poughkeepsie, NY 12602 Phone: (914) 473-4735 Contact: Caren Mahar e-mail: xps@xps.org

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