Skin-Related Support Groups, Foundations, & Organizations

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-A-   -B-   -C-   -D-   -E-   -F-   -G-   -H-   -I-   -J-   -K-   -L-   -M-   -N-   -O-   -P-   -Q-   -R-   -S-    -T-   -U-   -V-   -W-   -X-   -Y-   -Z-

-A-
Albinism
National Organization for Albinism and Hypopigmentation
1530 Locust Street Box 29
Philadelphia, PA 19102
Phone: (215) 545-2322 or (800) 473-2310
E-mail: noah@albinism.org         
Web page: www.albinism.org 
AlopeciaAreata
National Alopecia Areata Foundation
710 "C" Street, Suite 11
San Rafael, CA 94901
Contact: Vicki Kalabokes, Chief Executive Officer
Phone: (415) 456-4644     Fax: (415) 456-4274
E-mail: NAAF@compuserve.com
Web page: weber.u.washington.edu/~dvictor/natl.html

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-B-
Basal Cell Carcinoma See Skin Cancer  
Behcet's    
American Behcet's Foundation, Inc.
P.O. Box 54063        Minneapolis, MN 55454-0063
Phone: (800) 723-4238
  Birthmarks   
The Hemangioma and Vascular Birthmark Foundation
P.O. Box 106
Latham, N.Y. 12110
Contact: Linda Shannon, Executive Director
E-mail: hvbf@aol.com  or info@birthmark.org
Web page: www.birthmark.org 

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-D-
Darier-White Syndrome See Ichthyosis  
Dermatitis Herptiformis   
American Celiac Society
58 Musano Court West
Orange, NJ 07052
Phone: (973) 325-8837 Fax: (973) 669-8808    
Celiac Disease Foundation
3251 Ventura Boulevard,  Number 3
Studio City, CA 91604-1838
Phone: (818) 990-2354      Fax: (818) 990-2379
Web page: www.celiac.org
Celiac Sprue Association/USA
P.O. Box 31700
Omaha, NE 68131
Phone: (402) 558-0600
Gluten Intolerance Group of North America
15110 10th Avenue, SW,  Suite A
Seattle, WA 98166
Contact: Cynthia Kupper, RD, CDE, CEO
Phone: (206) 246-6652     Fax: (206) 246-6531
Web page: www.gluten.net
Dermatomyositis
Muscular Dystrophy Association (MDA)
3300 East Sunrise Drive
Tucson, AZ 85718
Phone: (800) 572-1717     Fax: (601) 529-5300
E-mail: mda@mdausa.org 
Web page: www.mdausa.org     

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-E-
Eczema   
The National Eczema Society
163 Eversholt Street
London NW1 1BU UNITED KINGDOM
Phone: (44) 71-388-4097     Fax: (44) 71-388-5882
Web page: www.eczema.org
The National Eczema Association for Science & Education (N.E.A.S.E.)
1221 S.W. Yamhill,  Suite 303
Portland, OR 97205
Contact: Robert O. McAlister, Ph.D., Executive Director
Phone: (503) 228-4430     Fax: (503) 273-8778  
Erythema Multiforme - Stevens Johnson's Syndrome
Stevens Johnson's Syndrome Foundation
9285 N. Utica Street
Westminster, CO 80030
Phone: (303) 430-9559     Fax: (303) 487-9359
E-mail: sjsupport@aol.com
Web page: members.aol.com/_ht_a/sjsupport/sjsmain.html

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-G-
Gluten Intolerance See Dermatitis Herpetiformis    

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-H-
Hansen's Disease See Leprosy   
Hemangiomas   
The Hemangioma and Vascular Birthmark Foundation
P.O. Box 106
Latham, N.Y. 12110
Contact: Linda Shannon, Executive Director
E-mail: hvbf@aol.com or info@birthmark.org
Web page: www.birthmark.org
See Klippel-Trenaunay Syndrome    
Hemochromatosis    
Hemochromatosis Research Foundation
P.O. Box 8569
Albany, NY 12208
Phone: (518) 489-0972      Fax: (518) 489-0227
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:
www.ashastd.org
Histiocytosis
Histiocytosis Association of America, Inc.
302 N. Broadway
Pitman, NJ 08071
Phone: (800) 548-2758     Fax: (609) 589-6614

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-I-
Ichthyosis
Foundation for Ichthyosis & Related Skin Types, Inc. (F.I.R.S.T.)
P.O. Box 669
Ardmore, PA 19003-0669
Phone:(610) 789-3995 or (800) 545-3286     Fax: (610) 789-4366
E-mail: ichthyosis@aol.com
Web page: www.scalyskin.org
National Registry for Ichthyosis & Related Skin Disorders
University of Washington
Box 356524
Seattle, WA 98195
Phone:(800) 595-1265 or (206) 616-3179     Fax: (206) 616-4302
E-mail: ichreg@u.washington.edu
Web page: depts.washington.edu/ichreg/ichthyosis.registry/

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-K-
Klippel-Trenaunay Syndrome
K-T Syndrome Support Group
4610 Wooddale Avenue
Edina, MN 55424
Contact: Judy Vessey, President
Phone: (612) 925-2596

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-L-
Leprosy
Damien Dutton Society for Leprosy Aid, Inc.
616 Bedford Avenue
Bellmore, NY 11710
Phone: (516) 221-5829
Gillis W. Long Hansen's Disease Center
5445 Point Clair Road
Carville, LA 70721
Phone: (504) 642-4700      Fax: (504) 642-4729
Lupus
American Lupus Society
3914 Del Amo Boulevard Suite 922
Torrance, CA 90503
Phone:(213) 542-8891 or (800) 331-9802
Bay Area Lupus Foundation
2635 North First Street Suite 206
San Jose, CA 95134
Phone: (408) 954-8600 or (800) 523-3363      Fax: (408) 954-8129
Lupus Foundation of America, Inc.
1300 Piccard Drive Suite 200
Rockville, MD 20850
Contact: Deb Blom, Field Service Manager
Phone: (301) 670-9292 or (800) 558-0121     Fax: (301) 670-9486
Web page: www.lupus.org
Massachusetts Chapter
425 Watertown Street
Newton, MA 02158
Contact: Mimi LaCamera, Executive Director
Phone: (617) 332-9014
Lymphomatoid Papulosis (& other Ki-1 positive cutaneous lymphomas)
Lymphomatoid Papulosis Central Registry
Department of Pathology
Beth Israel Hospital
330 Brookline Avenue
Boston, MA 02215
Contact: Marshall E. Kadin, M.D.
Phone: (617) 667-5886     Fax: (617) 667-4533
E-mail: mkadin@bidmc.harvard.edu

-M-
Melanoma See Skin Cancer

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-N-
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: 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
-O-
Ostomy
United Ostomy Association
19772 MacArthur Boulevard   Suite 200
Irvine, CA 92612-2405
Phone: (714) 660-8624 or (800) 826-0826     Fax: (714) 660-9262
E-mail: uoa@deltanet.com
Web page: www.uoa.org

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-P-
Port Wine Stain
National Congenital Port Wine Stain Foundation
125 East 63rd Street
New York, NY 10021
Contact: Janet O'Kane
hone:(516) 867-5137     Fax: (516) 869-1278
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 36 East 72nd Street (PHN)
New York, NY 10021
Phone: (212) 472-3181
Pseudoxanthoma Elasticum
National Association for Pseudoxanthoma Elasticum
3500 East 12th Avenue
Denver, CO 80206
Contact: Al Ferrari
Phone: (303) 355-3866     Fax: (303) 355-3859
E-Mail: pxenape@estreet.com
Website: www.napxe.org
PXE International, Inc.
23 Mountain Street
Sharon, MA 02067-2234
Ms. Sharon Terry, President
Phone: 781-784-3817     Fax#: 781-784-3817
Email: pxe@tiac.net
Website: www.pxe.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
Canadian Psoriasis Foundation
1306 Wellington Street, Suite 500-A
Ottawa, ON K1Y 3B2 CANADA
Phone: (613) 728-4000 or (800) 265-0926     Fax: (613) 728-8913
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: marcy@npfusa.org
National Psoriasis Foundation
6600 S.W. 92nd Avenue,  Suite 300
Portland, OR 97223-7195
Contact: Gail M. Zimmerman, Executive Director
Phone: (503) 244-7404     Fax: (503) 245-0626
E-mail: getinfo@npfusa.org
Web page: www.psoriasis.org
Problem Psoriasis Clinic
909 Ridgeway Loop Road
Memphis, TN 38103
Phone: (901) 767-3612     Fax: (901) 761-5468
{A Special clinic where patients with difficult-to-manage psoriasis
are invited to seek help based on microbiologic investigation
and antimicrobial therapy.}
Psoriasis Research Institute
600 Town & Country Village
Palo Alto, CA 94301
Phone: (415) 326-1848     Fax: (415) 326-1262
Psoriasis Society of Canada National
Office P.O. Box 25015
HaliFax, NS B3M 4H4 CANADA
Contact: Judy Misner, Founder
Phone: (902) 443-8680     Fax: (902) 457-1664

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-R-
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

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-S-
Sarcoidosis
Scleroderma
Scleroderma Federation, Inc. See United Scleroderma Foundation, Inc.
Scleroderma Info Exchange, Inc.
150 Hines Farm Road
Cranston, RI 02921
Contact: Harlan Hersey, Executive Director
Phone: (401) 943-3909
Scleroderma Research Foundation
Pueblo Medical Commons
2320 Bath Street Suite 307
Santa Barbara, CA 93105
Phone: (800) 441-CURE
Web page: www.srfcure.org
United Scleroderma Foundation, Inc.
(now merged with Sclerodema Federation)
89 Newbury St,  Suite 201
Danvers, MA 01923
Phone:(408) 728-2202 or (800) 722-HOPE     Fax: (408) 728-3328
Web page: swcybermall.com/scleroderma/
Shingles
VZV Research Foundation
40 East 72nd Street
New York, NY 10021
Phone: (212) 472-3181
Sjogren's Syndrome
National Sjogren's Syndrome Association
5815 North Black Canyon Highway,  Suite 103
Phoenix, AZ 85015-2200
Phone: (602) 433-9844     Fax: (602) 433-9838
E-mail: nssa@aol.com
Web page: www.sjogrens.org
Sjogren's Syndrome Foundation, Inc.
333 N. Broadway, Suite 2000
Jericho, NY 11753
Phone: (516) 933-6365    Fax: (516) 933-6368
    or
(800) 4-SJOGRENS, (800) 475-6473
Web page: www.sjogrens.com

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