Support Groups
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: www.alopeciaareata.com
Top Of Page
-B-
Basal Cell Carcinoma
Behcet's
American Behcet's Foundation, Inc.
P.O. Box 54063
Minneapolis, MN 55454-0063
Phone: (800) 723-4238
Web page: www.w2.com/behcets.html
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
Top Of Page
-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
Top Of Page
-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
Top Of Page
-G-
Gluten Intolerance See Dermatitis Herptiformis
Top Of Page
-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
Top Of Page
-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/
Top Of Page
-K-
Klippel-Trenaunay Syndrome
K-T Syndrome Support Group
4610 Wooddale Avenue
Edina, MN 55424
Contact: Judy Vessey, President
Phone: (612) 925-2596
Top Of Page
-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
Top Of Page
-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
Top Of Page
-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
Web page: www.napxe.org
PXE International, Inc.
PXE International
4301 Connecticut Avenue, NW
Suite 404
Washington, DC 20008-2369
Phone: 202.362.9599
Fax: 202.966.8553
www.pxe.org
email: pxe@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
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
Top Of Page
-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
Top Of Page
-S-
Sarcoidosis
National Sarcoidosis Resource Center
PO BOX 1593
Piscataway, NJ 08855-1593
Phone: (732) 699-0733
Fax: (732) 699-0882
E-mail: sandra@nsrc-global.net
Web page: www.nsrc-global.net
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 or (800) 4-SJOGRENS, (800) 475-6473
Fax: (516) 933-6368
Web page: www.sjogrens.com
Top Of Page
|
