| Patient Advocacy FOR ALL DERMATOLOGIC CONDITIONS - American Skin Association Inc.
345 Park Ave. South 4th Floor New York, NY 10010 800-499-SKIN
- Coalition of Skin
Diseases
P.O. Box 114 Mascoutah, IL 62258 618-566-2020 malinda@nfed.org - Coalition of Patient Advocates
6600 S.W. 92nd Ave Suite 300 Portland, OR 97223 Tel:
503-244-7404 FAX: 503-245-0626
AIDS - AIDS Hotline
Tel: 800-243-AIDS (Illinois Only) - Gay Men's Health Crisis
129 West 20th St New York, NY 10011 Tel: 212-807-6655 - HIV Testing & Counseling - STD
Clinic
Howard Brown Memorial Clinic 945 West George Chicago, IL 60657 Contact: Social Services Dept Tel: 312-871-5777
Albinism - National Foundation for Vitiligo & Pigment Disorders
9032 South Normandy Dr Centerville,
OH 45459 Tel: 513-885-5739 - National Organization for Albinism and Hypopigmentation (NOAH)
1530
Locust St Box 29 Philadelphia, PA 19102-4415 Tel: 215-545-2322 Tel: 800-473-2310 Answered 24 hrs E-mail:
noah@albinism.org WWW: http://www.albinism.org
Alopecia Areata Ataxia - National Ataxia Foundation
2600 Fernbrook Lane, Suite 119 Minneapolis, MN 55447 Contact:
Donna Gruetzmacher Tel: 763-553-0020 FAX:763-553-0167 e-mail: naf@ataxia.org WWW: http://www.ataxia.org
Basal Cell Carcinoma Nevus Syndrome/Gorlin's Syndrome - BCCNS Life Support Network
P.O. Box 321 Burton, OH 44021 440-635-0078 info@bccns.org www.bccns.org
Behcet's Syndrome - American Behcet's Foundation, Inc.
P.O. Box 54063 Minneapolis, MN
55454-0063 Tel: 800-723-4238 Tel: 800-7BEHCETS WWW: http://www.behcets.com
Cancer - American Cancer Society
1599 Clifton Rd, NE Atlanta, GA 30329 Tel: 800-227-2345 Tel: 404-320-3333 FAX: 404-325-2217 WWW: http://www.cancer.org
Cutaneous T-Cell Lymphoma - Mycosis Fungoides - Mycosis Fungoides Foundation
P.O. Box 374 Birmingham,
MI 48012 248-644-9017 info@mffoundation.org www.mffoundation.org - CTCL-MF E-Mail Support List
To subscribe, send E-mail to: listserv@acor.org In body of the message write: Subscribe CTCL-MF (Owned - founded by: Judy Jones judy@mffoundation.org)
Dermatitis Herpetiformis - American Celiac Society
58 Musano Ct West Orange, NJ 07052 Tel:
201-325-8837 - Celiac Disease Foundation
13251 Ventura Blvd, Number 3 Studio City, CA 91604-1838 Tel: 402-558-0600 - Celiac Sprue Association/USA
P.O. Box 31700 Omaha, NE 68131 Contact
person: Leon H. Rothmann Tel: 402-558-0600 FAX: 402-558-1347 - Gluten Intolerance Group (Dermatitis
Herpetiformis)
14110 10 Ave SW Suite A Seattle, WA 98166-1820 Contact: Cynthia Kupper, CRD Tel: 206-246-6652 Fax: 206-246-6531 info@gluten.net WWW: http://www.gluten.net
Dermatomyositis Dystrophic Epidermolysis Bullosa Ectodermal Dysplasia - National Foundation for Ectodermal Dysplasia
P.O. Box 114 Mascoutah, IL
62258 Contact: Mary Kaye Richter Tel: 618-566-2020 FAX: 618-566-4718 info@nfed.org WWW: http://www.nfed.org
Eczema - National Eczema Association for Science and Education
4460 Redwood Hwy. Suite 16D San Rafael, CA 94903 800-818-7546 info@nationaleczema.org www.nationalexczema.org
Ehlers-Danlos Syndrome Epidermolysis Bullosa - Dystrophic Epidermolysis Bullosa
Research Association of America (D.E.B.R.A.
of America, Inc.) 141 Fifth Ave New York, NY 10010 Contact: Miriam Feder Tel: 212-995-2220
Genetic Disease Hemochromatosis - Hemochromatosis Research Foundation
P.O. Box 8569 Albany, NY 12208 Contact:
Margit Krikker, MD Tel: 518-489-0972 FAX: 518-489-0227
Herpes - Herpes Resource Center
American Social Health Association P.O. Box 13827 Research
Triangle Park, NC 27709 Tel: 919 -361-8488 (Questions) Tel: 800 -230-6039 (Orders) WWW: http://www.ashastd.org/hrc/
Histiocytosis - Histiocytosis Association of America, Inc.
609 New York Rd Glassboro, NJ 08028 Tel: 609-881-4911
Human Papillomavirus - HPV Support Program
American Social Health Association P.O. Box 13827 Research Triangle Park, NC 27709 Tel: 800-227-8922
Ichthyosis Incontinentia Pigmenti Klippel-Trenaunay Leprosy (Hansen's Disease) - World Health Organization
Action Programme for the Elimination of
Leprosy 20 Avenue Appia CH-1211 Geneve 27 Suisse (Switzerland) Tel: 41 22 791 39 19 or 41 22 791 32 80 FAX:
41 22 791 48 50 e-mail: daumerie@who.ch WWW: http://www.who.int/lep - Damien Dutton Society for Leprosy Aid
616 Bedford Ave Bellmore, NY 11710 Contact: Howard
Crouch Tel: 516-221-5929
Lupus Erythematosus - American Lupus Society
260 Maple Ct, Suite 123 Ventura, CA 93003 Tel:
800-331-1802 FAX: 805-339-0467 - Lupus Foundation of America, Inc.
1300 Piccard Dr. Suite
200 Rockville, MD 20850-3226 Tel: 800-558-0121 info@lupus.org www.lupus.org
Marfan's Syndrome - National Marfan Foundation
22 Manhasset Ave. Port Washington, NY 11050 800-862-7326 FAX: 516-883-8712 staff@marfan.org www.marfan.org
Mastocytosis Melanoma - American Melanoma Foundation
USC/Norris Cancer Center 2025 Zonal Ave GH-10-442 Los Angeles, CA 90033-1034 Tel: 213-226-6352 FAX: 213-224-6925 - Melanoma Foundation
750
Menlo Ave Suite 250 Menlo Park, CA 94025 Contact: Marsden S. Bloise, MD
Neurofibromatosis - National Neurofibromatosis Foundation
95 Pine St - 16th Floor New York, NY
10005 Contact: Peter R.W. Bellerman Tel: 212-344-NNFF/6633 or 800-323-7938 FAX: 212 747-0004 E-mail: NNFF@aol.com WWW: http://nf.org
Nevi Pediculosis - National Pediculosis Association
P.O. Box 149 Newton, MA 02161 Contact: Deborah
Altschuler, Director Tel: 617-449-6487
Pemphigus and Pemphigoid Porphyria Port Wine Stain - National Congenital Port Wine Stain Foundation
123 East 63rd St New York, NY
10021 Tel: 516-867-5137 FAX: 516-869-1278
Pseudoxanthoma Elasticum (PXE) - National Association for Pseudoxanthoma Elasticum, Inc. (NAPE)
1420
Ogden St Denver, CO 80218-1910 Tel: 303 832-5055 FAX: 806 743-1603 E-Mail: derkhn@ttuhsc.edu - PXE International, Inc.
4301 Connecticut Ave., N.W. Suite 404 Washington, DC 20008 Tel: 781-784-3817 FAX: 781-784-6672 E-Mail: info@pxe.org WWW: http://www.pxe.org
Psoriasis Rosacea - National Rosacea Society 800 South Northwest Highway
Suite 200 Barrington, IL 60010 Contact: Suzanne Corr Tel: 847-382-8971 FAX: 847-382-5567 e-mail: rosacea@aol.com WWW: http://www.rosacea.org
Sarcoidosis - Sarcoidosis Family Aid & Medical Research Foundation
460 Central Ave East Orange,
NJ 07018 Contact: Geneva Ausley, President & Founder Tel: 201-399-3644 or 800-203-6429
Scabies
See Pediculosis Scleroderma - Scleroderma Federation, Inc.
Peabody Office Bldg One Newbury Peabody, MA 01960 Contact: Jackie MaGoon, Director Contact: Marte Coyle - President Tel: 508-535-6600 FAX: 508-535-6696 e-mail: sclerofed@aol.com WWW: http://www.scleroderma.org - Scleroderma Foundation of Greater Chicago
175 West Jackson Room 917 Chicago, IL 60604 Contact: Pat Straessle, Patient Services Tel: 312-922-3532 - Scleroderma Society
1725 York
Ave Suite 29-F New York, NY 10128 Contact: Mark Flagan, PhD., President Tel: 212-427-7040
- United Scleroderma Foundation
12 Kent Way Suite 101 Byfield, MA 01922 800-722-HOPE (4673) FAX: 408-728-3328 sfinfo@scleroderma.com WWW: http://www.scleroderma.com
Sjogren's Syndrome - National Sjögren Syndrome Association
21630 N. 19th Ave Phoenix,
AZ 85027 1-800-395-6772 FAX: 602-516-0111 - Sjögren's Syndrome Foundation, Inc.
8120
Woodmont Ave Suite 530 Bethesda, MD 20814 301-718-0300 sff@sjogrens.org WWW: http://www.sjogrens.com
Skin Cancer - Skin Cancer Foundation
245 Fifth Ave Suite 2402 New York, NY 10016 Contact:
Mitzi Moulds Tel: 212-725-5176 - Nevoid Basal Cell Carcinoma Syndrome Support Network
162 Clover
Hill St. Marlboro, MA 01752 Contact: Susan A. Charron Tel: 508-485-4873 Tel: 800-815-4447 FAX: 213-244-6925 E-mail: Souldansur@aol.com
Sturge-Weber Syndrome - Sturge-Weber Foundation (SWF)
P. O. Box 418 Mt. Freedom, NJ 07970 Tel: 800-627-5482 E-mail: swf@sturge-weber.com www.sturge-weber.com
Tuberous Sclerosis - Tuberous Sclerosis Alliance
801 Roeder Rd. Suite 750 Silver Srpirngs,
MD 20910 800-225-6872 info@tsalliance.org www.tsalliance.org
Vitiligo - National Foundation for Vitiligo & Pigment Disorders
9032 South Normandy Dr. Centerville,
OH 45459 Tel: 513-885-5739 - National Organization for Albinism and Hypopigmentation
1530 Locust
St. Box 29 Philadelphia, PA 19102 Tel: 800-473-2310 - National Vitiligo Foundation, Inc.
Box 6337 Tyler, TX 75711 Contact: Allen C. Locklin, President Cheryl McInnis, Director Tel: 903-534-2925 FAX: 903-534-8075 e-mail: 73071.33@compuserve.com WWW: http://www.nvfi.org
Vascular Anomailies - National Organization of Vascular Anomalies
NOVA PO Box 0358 Findlay,
OH 45840 Contact: Karla Hall, Executive Director 419-425-1593 (fax or phone) email: hemangnews@msn.com WWW: www.novanews.org
Xeroderma Pigmentosum International Foundation for Dermatology Chairman: International Foundation for Dermatology
Professor Roderick J Hay, Faculty of Medicine and Health Sciences, Queens University Belfast 73 University Road Belfast BT7 1NN Northern Ireland E-mail: roderick.hay(a)ifd.org http://www.ifd.org |