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  Skin conditions    Patient support groups  Product information             

AIDS

       AIDS Hotline

        Phone: (800) 243-AIDS (Illinois only)

        http://www.hivpositive.com

          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

              http://www.thebody.com/

             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 

              Alopecia Areata

             National Alopecia Areata Foundation

             710 "C" Street

             Suite 11

             San Rafael, CA 94901

            Phone: (415) 456-4644 Fax: (415) 456-4274

           NAAF@compuserve.com

            http://www.alopeciaareata.com/

               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       

      GO TO INDEX     

             Arthritis Foundation

             Post Office Box 1900

             Atlanta, GA 30326

            Phone: (800) 283-7800 Fax: (404) 872-0457

             Web page:  http://www.arthritis.org/

   GO TO INDEX     

               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

             Fax: (612) 624-7686

   GO TO INDEX           

            National Ataxia Foundation

             2600 Fernbrook Lane

             Suite 119

             Minneapolis, MN 55447-4752

             Phone: (612) 553-0020 Fax: (612) 553-0167

              mailto:naf@mr.net  

 GO TO INDEX              

             Behcet's

             American Behcet's Disease Association

             PO Box 280240

             Memphis, TN 38168-0240

             Phone: 800-7BEHCETS

             Web page: www.behcets.com          

              American Behcet's Foundation, Inc.

             P.O. Box 54063

             Minneapolis, MN 55454-0063

             Phone: (800) 723-4238

             Web page: http://www.w2.com/behcets.html   

   GO TO INDEX          

             Birthmarks

             The Hemangioma and Vascular Birthmark Foundation

             P.O. Box 106

             Latham, N.Y. 12110

             Phone: (518) 782-9637

             E-mail: hvbf@aol.com

             info@birthmark.org

             http://www.birthmark.org  

  GO TO INDEX          

             Bloom's Syndrome

             Bloom's Syndrome Registry

             Laboratory of Human Genetics/New York Blood Center

             310 East 67th Street

             New York, NY 10021

             Phone: (212) 570-3075 Fax: (212) 570-3195

             Cancer             

             American Cancer Society

             625 North Court

             Palatine, IL 60067

             Phone: (800) ACS-2345

           www.cancer.org

             National Cancer Institute

             Office of Cancer Communications

             9000 Rockville Pike

             Building 31, Room 10-A-31

             Bethesda, MD 20892

             Phone: (301) 496-6631 Fax: (301) 402-4945

             Web page: www.nci.nih.gov

             National Coalition for Cancer Survivorship

             1010 Wayne Avenue

             Suite 505

             Silver Spring, MD 20910-5600

             Phone: (888) YES-NCCS (888-937-6227)

             Fax: (301) 565-9670

             E-mail: info@cansearch.org

             Web page: www.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

             PO Box 552

             Stanleytown, VA 24168

             Phone: (540) 629 - 2369

             Dermatitis Herpetiformis

             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

             Celiac Sprue Association/USA

             P.O. Box 31700

             Omaha, NE 68131

             Phone: (402) 558-0600

             Gluten Intolerance Group of North America

             15110 10th Avenue, SW

             Suite A

             Seattle, WA 98166

              Cynthia Kupper

             (206) 246-6652 Fax: (206) 246-6531

              gig@accessone.com

            www.gluten.net

             Dermatomyositis

             Muscular Dystrophy Association (MDA)

             3300 East Sunrise Drive

             Tucson, AZ 85718

             Phone: (800) 572-1717 Fax: (601) 529-5300

              mda@mdausa.org

               www.mdausa.org

             Dermatopathology

             Dermatopathology Foundation

             P.O. Box 377

             Canton, MA 02021

             Contact: Wendy Christison, Administrator

             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

             Ectodermal Dysplasia

             National Foundation for Ectodermal Dysplasia

             219 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

             The National Eczema Society

             163 Eversholt Street

             London NW1 1BU

             UNITED KINGDOM

             Phone: (44) 71-388-4097 Fax: (44) 71-388-5882

              www.eczema.org

             The National Eczema Association for Science & Education

             (N.E.A.S.E.)

             1220 SW Morrison Street

             Suite 433

             Portland, OR 97205

              (503) 228-4430 Fax: (503) 224-3363

             Ehlers Danlos Syndrome

             Ehlers Danlos National Foundation

             6399 Wilshire Blvd., Ste 510

             Los Angeles, CA 90048

             Phone: (213) 651-3038

              loosejoint@aol.co

              www.ednf.org/

             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

             Epidermolysis Bullosa

             Epidermolysis Bullosa Research

             Association of America, Inc. (DebRA)

             40 Rector Street, 14th Floor

             New York, NY 10006

             Phone: (212) 513-4090 Fax: (212) 513-4099

              debraorg@erols.com

             www.debra.org

             National Epidermolysis Bullosa Registry

             University of North Carolina-Chapel Hill Department of Dermatology

             Building #1 - CB# 3369

             Bolin Heights

             Chapel Hill, NC 27514-3369

             (919) 966-3321

            jdfine@med.unc.edu

             Phone: (919) 966-2007 Fax: (919) 966-7080

              ljohnson@med.unc.edu

              www.med.unc.edu/derm/ebr.html

             Erythema Multiforme

             Stevens Johnson’s Syndrome

             Stevens Johnson’s Syndrome Foundation

             9285 N. Utica Street

             Westminster, CO 80030

             Phone: (303) 430-9559

             Fax: (303) 487-9359

             sjsupport@aol.com

             http://members.aol.com/sjsupport

             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

             alliance@capaccess.org

             http://medhlp.netusa.net/agsg/agsgsup.htm

             Hemangiomas

             The Hemangioma and Vascular Birthmark Foundation

             P.O. Box 106

             Latham, N.Y. 12110

             Phone: (518) 782-9637

             hvbf@aol.com

             info@birthmark.org

             http://www.birthmark.org

            Hemochromatosis

             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

             Phone: (919) 361-8488 (National Herpes Hotline)

             Purchase Herpes Info: (800) 230-6039

              http://sunsite.unc.edu/ASHA/

             Histiocytosis

             Histiocytosis Association of America, Inc.

             302 N. Broadway

             Pitman, NJ 08071

             Phone: (800) 548-2758 Fax: (609) 589-6614

             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

             Arizona HPV Support Group

             7336 E. Shoeman Lane

             Suite 110W

             Scottsdale, AZ 85251

             Phone: (602) 994-8330 or (800) 223-2159 - Hotline

            Los Angeles Area HPV Support Group

             820 Manhattan Avenue

             Number 102

             Manhattan Beach, CA 90266

             Phone: (310) 798-2273

             North Florida HPV Support Group

             North Florida Women's Health and Counseling

             126 Salem Court, Suite B

             Tallahassee, FL 32301

             Phone: (904) 877-3183

             Merrimack Valley HPV Support Group

             Holy Family Hospital

             70 East Street

             Methuen, MA 01844

             Phone: (508) 687-0156 x2432

             Omaha HPV Support Group

             c/o Planned Parenthood

             4610 Dodge St.

             Omaha, NE 68132

             Phone: (402) 397-2739

            Cincinnati HPV Support Group

             P.O. Box 12407

             Cincinnati, Ohio 45212-0407

             Phone: (513) 357-7300

               Richland County HPV Support Group

             PO Box 3881

             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: (803) 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

             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

              http://www.libertynet.org/ichthyos/

             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

             Klippel-Trenaunay Syndrome

             K-T Syndrome Support Group

             4610 Wooddale Avenue

             Edina, MN 55424

             Phone: (612) 925-2596

             www.tc.umn.edu

             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

             Lupus

             Bay Area Lupus Foundation

             2635 North First Street

             Suite 206

             San Jose, CA 95134

             Phone: (408) 954-8600 or (800) 523-3363 Fax: (408) 954-8129

             Lupus Foundation of America, Inc.

             1300 Piccard Drive

             Suite 200

             Rockville, MD 20850-4303

             Phone: (301) 670-9292 or (800) 558-0121 Fax: (301) 670-9486

               http://www.lupus.org/

             Massachusetts Chapter

             425 Watertown Street

             Newton, MA 02158

             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

             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 or (800) 8-MARFAN Fax: (516) 883-8040

              http://www.marfan.org/

             Muscular Dystrophy

             Muscular Dystrophy Association

             342 Madison Avenue

             Room 1426

             New York, NY 10173

             Phone: (212) 557-8450 Fax: (212) 986-8327

             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

             http://www.nf.org/

             Nevi

             Nevus Network

             Congenital Nevus Support Group

             PO Box 1981

             Woodbridge, VA 22193

             Phone: (703) 492-0253 Fax: (405) 377-3403

              http://www.nevusnetwork.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

             http://www.uoa.org/

             Pediculosis

             National Pediculosis Association

             P.O. Box 610189

             Newton, MA 02161-0189

             Phone: (617) 449-6487 Fax: (617) 449-8129

             Plastic Surgery

             Plastic Surgery Research Foundation

             P.O. Box 23220

             SanDiego, CA 92193

             Phone:(619) 467-9010

             Port Wine Stain

             National Congenital Port Wine Stain Foundation

             125 East 63rd Street

             New York, NY 10021

             Phone:(516) 867-5137 Fax: (516) 869-1278

             Porphyria

             American Porphyria Foundation

             P.O. Box 22712

             Houston, TX 77227

             Phone: (713) 266-9617 Fax: (713) 871-1788

               http://www.enterprise.net/apf/     

             Post Herpetic Neuralgia

             VZV Research Foundation

             36 East 72nd Street

             (PHN) 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

             Phone: (718) 494-5333 Fax: (718) 494-1026

             Pseudoxanthoma Elasticum

             National Association for Pseudoxanthoma Elasticum

             3500 East 12th Avenue

             Denver, CO 80206

             Phone: (303) 355-3866

             FAX:  (303) 355-3859

              http://www.ttuhsc.edu/pages/nape

             PXE International, Inc.

             23 Mountain Street

             Sharon, MA 02067

             781-784-3817

             fax# 781-784-6672

             http://www.pxe.org/            

             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 page: http://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

             National Psoriasis Foundation

             6600 S.W. 92nd Avenue

             Suite 300

             Portland, OR 97223-7195

             Phone: (503) 244-7404 or (800) 723-9166Fax: (503) 245-0626

             http://www.psoriasis.org/

             Psoriasis Society of Canada

             National Office

             P.O. Box 25015

             HaliFax, NS B3M 4H4

             CANADA

             Phone: (902) 443-8680 Fax: (902) 457-1664

             Rare Disorders

             National Organization for Rare Disorders

             P. O. Box 8923

             New Fairfield, CT 06812

             Phone: (203) 746-6518 or (800) 999-6673 Fax: (203) 746-6481

             http://www.pcnet.com/

          Rosacea

             National Rosacea Society

             800 South Northwest Highway

             Suite 200

             Barrington, IL 60010

              Phone: (847) 382-8971 or (888) NO BLUSH Fax: (847) 382-5567

              http://www.rosacea.org/

             Rheumatic Disease

             The Road Back Foundation

             4985 North Lake Hill Road

             Delaware, OH 43015-9249

             Phone: (740) 881-5601

              http://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

              http://www.nsrc-global.net/          

             Scleroderma

             Scleroderma Info Exchange, Inc.

             150 Hines Farm Road

             Cranston, RI 02921

             Contact: Harlan 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

             Web page: http://www.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: http://www.scleroderma.com/

             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

              http://www.sjogrens.org/

              Sjogren’s Syndrome Foundation, Inc.

             333 N. Broadway, Suite 2000

             Jericho, NY 11753

             Phone: (516) 933-6365 Fax: (516) 933-6368

             or (800) 4-SJOGRENS, (800) 475-6473

              http://www.sjogrens.com/          

              Skin

             American Skin Association

             150 East 58th Street

             33nd Floor

             New York, NY 10155-0002

             Phone: (212) 753-8260 FAX: (212) 688-6547

             (Research & Education for ALL Skin Disorders)

            mailto: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

             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

              Coalition for Skin Cancer Prevenion in Maryland

             MedChi, The Maryland State Medical Society

             1211 Cathedral Street

             Baltimore, MD 21201

             Phone: (410) 539-0872, ext. 340

              http://www.sunguardman.org/

             Nevoid Basal Cell Carcinoma Syndrome Support Network

             162 Clover Hill Court

             Marlboro, MA 01752

             Phone: (508) 485-4873 Fax: (508) 481-4072

             Social Health

             American Social Health Association

             P.O. Box 13827

             Research Triangle Park, NC 27709

             Phone: (919) 361-8400 Fax: (919) 361-8425

              http://www.ashastd.org/

             Sturge-Weber Syndrome

             Sturge-Weber Foundation

             Post Office Box 418

             Mt. Freedom, NJ 07970

             Phone: (973) 895-4445 or (800) 441-2873 Fax: (973) 895-4846

              http://www.sturge-weber.com/

             Tuberous Sclerosis

             National Tuberous Sclerosis Association

             8181 Professional Place, Suite 110

             Landover, MD 20785-2226

             Phone: (800) 225-6872 or (301) 459-9888

             Fax: (301) 459-0394

              mailto:vicky.whittemore@ntsa.org

             Web page: http://www.ntsa.org/           

             Vitiligo

             National  Organization for Albinism & Hypopigmentation

             1530 Locust Street #29

             Philadelphia, PA 19102-4415

             (215) 545-2322 x128; or (800) 473-2330

              mailto:webmaster@albinism.org 

            http://www.albinism.org/

             National Vitiligo Foundation

             611 South Fleishel

             Tyler, TX 75701

             Phone: (903) 531-5469  Fax: (903) 531-1234

             mailto:vitiligo@trimofran.org

             http://www.vitiligofoundation.org/

             Vulvodynia

             National Vulvodynia Association

             P.O. Box 4491

             Silver Spring MD 20914-4491

             Phone: (301) 299-0775 Fax: (301) 299-3999

             http://www.nva.org/   

             mailto:: matenva@graphcom.com

             Xeroderma Pigmentosum

             Xeroderma Pigmentosum Registry

             Department of Pathology

             UMDNJ-New Jersey Medical School

             185 South Orange Avenue

             Newark, NJ 07103

             Phone:(973) 456-4405

             Xeroderma Pigmentosum Society

             P.O. Box 4759

             Poughkeepsie, NY 12602

             Phone: (914) 473-4735

              xps@xps.org

              www.xps.org