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Patient Advocacy
FOR ALL DERMATOLOGIC CONDITIONS
- American Skin Association Inc.
345 Park Ave. South
4th Floor
New York, NY 10010
800-499-SKIN
info@skinassn.org
www.skinassn.org
- 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
- Klippel-Trenaunay Support Group
KT Syndrome
Contact: Judy Vessey
5404 Dundee Rd
Edina, MN 55436
Tel: 612-925-2596
FAX: 612-925-4708
e-mail: jvessey@uswest.net
WWW: http://www.k-t.org
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
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