The following is a list of helpful and related links:

Albinism

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

 

Alopecia Areata

National Alopecia Areata Foundation
14 Mitchell Blvd
San Rafael, CA 94903
Contact: Lisa Gallagher, Chief Executive Officer
Phone: (415) 472-3780 Fax: (415) 472-5343
E-mail: info@naaf.org
Web page: www.naaf.org

 

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: naf@ataxia.org
Web page: www.ataxia.org

 

Behcet's

American Behcet's Disease Association
PO Box 280240
Memphis, TN 38168-0240
Phone: 800-7BEHCETS
E-mail: nyyy49@prodigy.com
Web page: www.behcets.com

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 page: http://www.birthmark.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 page: 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 page: 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: 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

 

Dermatitis HerpEtiformis

American Celiac Society
P.O. Box 23455
New Orleans, LA. 70183.
Phone: (973) 325-8837 Fax: (973) 669-8808
Email: AmerCeliacSoc@netscape.net

Gluten Intolerance Group of North America
15110 10th Avenue, SW
Suite A
Seattle, WA 98166
Contact: Cynthia Kupper
Phone: (206) 246-6652 Fax: (206) 246-6531
Email: info@gluten.net
Web page: www.gluten.net

 

Dermatopathology

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

 

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

The National Eczema Society
Hill House
Highgate Hill
London N19 5NA
UNITED KINGDOM
Phone: (020) 7281-3553 Fax: (020) 7281-6395
Information Helpline: 0870 241 3604 (1-4pm Mon-Fri)
Web page: www.eczema.org

The National Eczema Association for Science & Education
(N.E.A.S.E.)
1220 SW Morrison Street
Suite 433
Portland, OR 97205
Contact: Robert O. McAlister, Ph.D., Executive Director
Phone: (503) 228-4430 or (800) 818-7546 Fax: (503) 224-3363
Email: nease@teleport.com
Web page: www.eczema-assn.org

 

Ehlers Danlos Syndrome

Ehlers Danlos National Foundation
6399 Wilshire Blvd., Ste 203
Los Angeles, CA 90048
Phone: (323) 651-3038
E–mail: EDNFBoard@aol.com
Web page: www.ednf.org

 

Epidermolysis Bullosa

Dystrophic Epidermolysis Bullosa Research
Association of America, Inc. (DebRA)
301 East 57th Strret, 3rd Floor
New York, NY 10006
Contact: Jean Campbell. Executive Director
Phone: (212) 715-1583 Fax: (212) 715-1507
E-mail: JCAMPBELL21@nyc.rr.com
Web page: www.debra.org

 

Erythema Multiforme
Stevens Johnson’s Syndrome

Stevens Johnson’s Syndrome Foundation
PO Box 350333
Westminster, CO 80035-0333
Phone: (303) 635-1241
Fax: (303) 487-9359
E-mail: sjsupport@aol.com
Web page: http://hometown.aol.com/sjsupport

 

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

 

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

 

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 Fax: (215) 631-1413
E-mail: info@scalyskin.org
Web page: 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

 

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

Lupus Foundation of Massachusetts
40 Speen Street
Framingham, MA 01701-1898
Contact: Elyse Smith, President
Phone: (508) 872-5200 or (877) NO-LUPUS Fax: (508) 872-0060
E-mail: info@lupusmass.org
Web page: www.lupusmass.org

 

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
Email: staff@marfan.org
Web page: www.marfan.org

 

MOHS

American College of Mohs Micrographic Surgery and Cutaneous Oncology
555 East Wells Street
Suite 1100
Milwaukee, WI 53202-3823
Phone: (414) 347-1103 or (800) 500-7224
FAX: (414) 272-6070
Email: info@mohscollege.org
Web: http://www.mohscollege.org

 

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

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 page: www.nevusnetwork.org

Nevus Outreach, Inc.
1601 Madison Blvd.
Bartlesville, OK 74006
Phone/Fax # (918) 331-0595
Outreach Hotline: (877) 426-3887
Email: info@nevus.org
Website: www.nevus.org
Contact: Kathy Wright, Executive Director

 

Pediculosis

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

 

Pemphigus

National Pemphigus Foundation
Atrium Plaza, Suite 203
828 San Pablo Avenue
Albany, CA 94706
Phone: (510) 527-4970 Fax: (510) 527-8497
E-mail: Pvnews@aol.com
Web: www.pemphigus.org

 

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 page: www.enterprise.net/apf/

 

Post Herpetic Neuralgia

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 page: www.vzvFoundation.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: 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: info@ifpa-pso.org
Web page: www.ifpa-pso.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

 

Rare Disorders

National Organization for Rare Disorders
P. O. Box 8923
New Fairfield, CT 06812
Contact: Abbey S. Meyers, Executive Director
Phone: (203) 746-6518 or (800) 999-6673 Fax: (203) 746-6481
E-mail: orphan@raredisease.org
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
Web page: www.rosacea.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 page: www.nsrc-global.net

Scleroderma

Scleroderma Research Foundation
2320 Bath Street
Suite 315
Santa Barbara, CA 93105
Phone: (800) 441-CURE or (805) 563-9133 Fax: (805) 563-2402
E-mail: srfcure@srfcure.org
Web page: www.srfcure.org

Scleroderma Foundation
12 Kent Way, Suite 101
Byfield, MA 01922
Phone: (800) 722-HOPE or (978) 463-5843
Fax: (978) 463-5809
E-mail: sfinfo@scleroderma.org
Web page: www.scleroderma.com

 

Shingles

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 page: www.vzvFoundation.org

 

Sjogren's Syndrome

National Sjogren's Syndrome Association
PO Box 22066
Beachwood, OH 44122
Phone: (216) 292-3866 or (800) 395-6772 FAX: (216) 292-4955
E-mail: nssa@aol.com
Web page: www.stepstn.com/nord/org_sum/7.htm

 

Skin

American Skin Association
346 Park Avenue South, 4th Floor
New York, NY 10010
Phone: (212) 889-4858 or (800) 499-SKIN FAX: (212) 889-4959
(Research & Education for ALL Skin Disorders)
Email: info@skinassn.org
Web: www.skinassn.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 page: 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 page: www.melanomafoundation.org

 

Sturge-Weber Syndrome

Sturge-Weber Foundation
Post Office Box 418
Mt. Freedom, NJ 07970
Phone: (973) 895-4445 or (800) 627-5482 Fax: (973) 895-4846
E-mail: swf@sturge-weber.com
Web page: www.sturge-weber.com

 

Surgery

American Society for Dermatologic Surgery
Effective April 8, 2002 our address will be:
930 E. Woodfield Rd., Schaumburg, IL 60173-4927
Our correspondence address, phone, fax and remain the same:
P.O. Box 4014, Schaumburg, IL 60168-4014
Phone: (847) 330-9830 or (800) 441-ASDS Fax: (847) 330-1135
Web page: www.asds-net.org

 

Tuberous Sclerosis

Tuberous Sclerosis Alliance
801 Roeder Road, Suite 750
Silver Springs, MD 20912
Phone: 301-562-9890 or 800-225-6872 Fax: 301-562-9870
Web page: www.tsalliance.org

 

Vitiligo

National Organization for Albinism & Hypopigmentation
PO Box 959
East Hampstead, NH 03826-0959
Phone: (603) 887-2310 or (800) 473-2310 Fax: (603) 887-2310
E-mail: webmaster@albinism.org
Web page: www.albinism.org

National Vitiligo Foundation
611 South Fleishel Avenue
Tyler, TX 75701
Phone: (903) 531-0074 Fax: (903) 531-1234
E-mail: vitiligo@ballistic.com
Web page: www.vitiligofoundation.org

 

Vulvodynia

National Vulvodynia Association
P.O. Box 4491
Silver Spring, MD 20914-4491
Phone: (301) 299-0775 Fax: (301) 299-3999
E-mail: mate@nva.org
Web page: www.nva.org

Xeroderma Pigmentosum

Xeroderma Pigmentosum Society
P.O. Box 4759
Poughkeepsie, NY 12602
Phone: (518) 851-2612
Contact: Caren and Dan Mahar
E -mail: xps@xps.org
Web page: www.xps.org