Dermatology NYC Association of Greater New York

Patient Advocacy

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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

     
  • 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

  


 
 

 

Click here to contact Dr. Gary Rothfeld for further questions.

 
 
 
 
 
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