Patient Advocacy Links


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

National Alopecia Areata Foundation
14 Mitchell Blvd.
San Rafael, CA 94903
Tel: 415-472-3780
info@naaf.org
www.naaf.org

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
440-834-0011
Toll-free 866-834-1895
Fax 440-834-0132
info@bccns.org
www.gorlinsyndrome.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

Myositis Association of America
755 Cantrell Ave, Suite C
Harrisonburg, VA 22801
Tel: (540) 433-7686
FAX: (540) 432-0206
E-mail: maa@myositis.org
WWW: http://www.myositis.org

Dystrophic Epidermolysis Bullosa

DEBRA of America
5 West 36th St.
Suite 404
New York, NY 10018
212-868-1573
debra.nurse@mindspring.org
www.debra.org

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

Ehlers-Danlos Syndrome Foundation
6399 Wilshire Blvd., Ste. 200
Los Angeles, CA 90048
Tel: 323-651-3038
e-mail: staff@ednf.org
WWW: http://www.ednf.org/

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

The Alliance of Genetics Support Groups
4301 Connecticut Ave, NW, Suite 404
Washington, DC 20008-2304
Tel: 202-966-5557
Helpline: 800-336-GENE (4363)
FAX: 202-966-8553
e-mail: info@geneticalliance.org
WWW: http://www.geneticalliance.org/

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

Foundation for Ichthyosis and Related Skin Types, Inc. (FIRST)
650 N. Cannon Ave, Suite 17
Landsdale, PA 19446
Tel: 800-545-3286
Fax: 215-631-1413
e-mail: info@scalyskin.org
WWW: http://www.scalyskin.org

Incontinentia Pigmenti

National Inconitentia Pigmenti Foundation
41 East 57th St, 5th floor
New York, NY 10022
Contact: Susanne B. Emmerich
Tel: 212-207-4636
Fax: 212-371-7345
e-mail: nipf@pipeline.com
WWW: http://imgen.bcm.tmc.edu/IPIF

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

The Mastocytosis Society, Inc.
11208 Vienna Dr
Denton, MD 21629
WWW: http://www.mastocytosis.com

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

Nevus Network
Congenital Nevus Support Group
P.O. Box 1981
Woodbridge , VA 22192
Tel: (703) 492-0253
E-mail: nevusnet@bigfoot.com
WWW: http://www.nevusnetwork.org

Nevus Outreach, Inc.
600 S. Delaware Ave. Suite 200
Bartlesville, OK 74003
Tel: (918) 331-0595
E-mail: info@nevus.org
WWW: http://www.nevus.org

Pediculosis

National Pediculosis Association
P.O. Box 149
Newton, MA 02161
Contact: Deborah Altschuler, Director
Tel: 617-449-6487

Pemphigus and Pemphigoid

Internationall Pemphigus Foundation
828 San Pablo Ave.
Suite 210
Albany, CA 94706
Tel: 510-527-4970
FAX: 510-527-8497
e-mail: pemphigus@pemphigus.org
WWW: http://www.pemphigus.org

The Pemphigus and Pemphigoid Society
15934 Hesperian Blvd #122
San Lorenzo, CA 94580
Tel: 510-755-4266
WWW: http://www.1clever.org

Porphyria

American Porphyria Foundation
P.O. Box 22712
Houston, TX 77227
Contact: Desiree Lyon, Director
Tel:713-266-9617
Fax: 713-871-1788
WWW: http://www.porphyriafoundation.com

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

National Psoriasis Foundation
6600 S.W. 92nd, Suite 300
Portland, OR 97223
800-723-9166
Fax: 503-245-0626
e-mail: getinfo@psoriasis.org
WWW: http://www.psoriasis.org

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 Anomalies

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

Xeroderma Pigmentosum Society
P.O. Box 4759
Poughkeepsie, N.Y. 12602
Tel: 518-851-2612
e-mail: xps@xps.org
WWW: http://www.xps.org

Last Updated on Monday, December 09, 2013 04:27 PM