|
| |
 |
| -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
|
| Alopecia
Areata |
|
National
Alopecia Areata Foundation
14 Mitchell Boulevard
San Rafael, CA 94903
Contact: Vicki Kalabokes, Chief Executive Officer
Phone: (415) 472-3780 Fax: (415)
472-5343
E-mail: info@naaf.org
Web page: www.naaf.org
|
| American
Skin Association, Inc. |
|
American
Skin Association, Inc.
346 Park Avenue South, 4th Floor
New York, NY 10010
Phone: (212) 889-4858 Fax: (212) 889-4959
E-mail: info@skinassn.org
Web page: www.skinassn.org
|
 |
| -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
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
Phone: (518) 782-9637
E-mail: hvbf@aol.com
or info@birthmark.org
Web page: www.birthmark.org
|
|
| -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: laran.waisman.wisc.edu/fv/www/lib_celi.htm
|
|
Celiac
Sprue Association/USA
P.O. Box 31700
Omaha, NE 68131
Phone: (402) 558-0600 |
|
Gluten
Intolerance Group
15110 10th Avenue SW, Suite A
Seattle, WA 98166
Phone: (206) 246-6652 Fax: (206) 246-6531
E-mail: info@gluten.net
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
|
| Dystrophic
Epidermolysis Bullosa |
|
DebRA-Dystrophic
Epidermolysis Bullosa Research
301 East 57th Street, 3rd Floor
New York, NY 10022
Phone: (212) 715-1583 Fax: (212)
715-1507
E-mail: JCAMPBELL21@nyc.rr.com
Web page: www.debra.org
|
|
| -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.)
6600 SW 92nd Avenue, Suite 300
Portland, OR 97223-7195
Phone: (800) 818-7546
E-mail: nease@teleport.com
Web page: www.eczema-assn.org
|
| Ectodermal
Dysplasias |
|
National
Foundation for Ectodermal Dysplasias
410 E. Main Street
Mascoutah, IL 62258
Phone: (618) 566-2020 Fax: (618)
566-4718
E-mail: nfed1@aol.com
Web page: www.nfed.org
|
| Ehlers
Danlos |
|
Ehlers
Danlos National Foundation
6399 Wilshire Blvd, Suite 203
Los Angeles, CA 90048
Phone: (323) 651-3038 Fax: (323)
651-1366
E-mail: ednfboard@aol.com
Web page: www.ednf.org
|
| 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/sjsupport
|
|
| -G- |
| Gluten
Intolerance See Dermatitis
Herpetiformis
|
|
| -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
Phone: (518) 782-9637
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: sunsite.unc.edu/ASHA/ |
| Histiocytosis
|
|
Histiocytosis
Association of America
332 North Broadway
Pitman, NJ 08071 USA
Phone: +1 856-589-6606
Phone: +1 800-548-2758 (US and Canada Only)
Fax: +1 856-589-6614
Contact: Jeffrey M. Toughill, President
Email: JMT4HISTIO@aol.com
Web page: www.histio.org
|
|
| -I- |
| Ichthyosis
|
|
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: weber.u.washington.edu/~geoff/ichthyosis.registry
|
| Inflammatory
Skin Disorders |
|
Inflammatory
Skin Disease Institute
P. O. Box 1074
Newport News, VA 23601
Phone:(757) 223-0795 Fax: (757)
595-1842
Toll Free: (800) 484-6800 Ext. 6321
E-mail: ExDirlSKI@aol.com
|
|
| -K-
|
| Klippel-Trenaunay
Syndrome |
|
K-T
Syndrome Support Group
4610 Wooddale Avenue
Edina, MN 55424
Contact: Judy Vessey, President
Phone: (612) 925-2596
Web page: www.tc.umn.edu/nlhome/m474/vesse001/k-t.html
|
|
| -L- |
| Large
Congenital Nevus |
|
Nevus
Outreach, Inc..
1601 Madison Blvd.
Bartlesville, OK 74006
Phone: (918) 331-0595 Fax: (918)
331-0595
Toll Free: (877) 426-3887
E-mail: info@nevus.org
Web page: www.nevus.org
|
| 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
E-mail: info@lupus.org
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- |
| Marfan
Syndrome |
|
National
Marfan Foundation
382 Main Street
Port Washington, NY 11050
Phone: (516) 883-8712 X 17 Fax:
(516) 883-8040
Toll Free: (800) 862-7326
E-mail: research@marfan.org
Web page: www.marfan.org
|
| Melanoma
See Skin Cancer |
| Mycosis
Fungoides |
|
Mycosis
Fungoides Foundation
P. O. Box 374
Birmingham, MI 48102
Phone: (248) 644-9014 Fax: (248)
644-9014
E-mail: judy@MFFoundation.org
Web page: www.mffoundation.org
|
|
| -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
|
|
| -P- |
| Pemphigus |
|
National
Pemphigus Foundation
828 San Pablo Avenue, Suite 203
Albany, CA 94706
Phone: (510) 527-4970 Fax: (510)
527-8497
E-mail: PVnews@aol.com
Web page: www.pemphigus.org
|
| 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 |
| 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: nape@napenet.org
Website: www.napenet.org |
|
PXE
International
4301 Connecticut Avenue, NW
Suite 404
Washington, DC 20008-2369
Phone: 202.362.9599 Fax#: 202.966.8553
Email: pxe@pxe.org
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 |
| Pseudoxanthoma
Elasticum |
|
National
Association for Pseudoxanthoma Elasticum (NAPE).
3500 East 12th Avenue
Denver, CO 80206
Phone: (303) 355-3866 Fax: (303)
355-3859
E-mail: pxenape@estreet.com
Web page: www.napxe.org
|
| 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 |
|
| -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
Web page: www.rosacea.org
|
|
| -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
Foundation See United Scleroderma Foundation,
Inc.
12 Kent Way, Suite 101
Byfiled, MA 01922
Phone: (978) 463-5843 Fax: (978)
463-5809
E-mail: sfinfo@scleroderma.org
|
|
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
Phone: (805) 563-9133 Fax: (805) 563-2402
E-mail: charles_spaulding@srfcure.org
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: www.scleroderma.com
|
| 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
8120 Woodmont Avenue, Suite 530
Bethesda, MD 20814
Phone: (301) 718-0300 Fax: (301) 718-0322
Toll Free: (800) 475-6473
E-mail: ssf@sjogrens.org
Web page: www.sjogrens.com
|
| Skin
Cancer |
|
Skin
Cancer Foundation
245 Fifth Avenue, Suite 1403
New York, NY 10016
Phone:(212) 725-5176 Fax: (212)
725-5751
E-mail: info@skincancer.org |
|
American
Melanoma Foundation
Biologics Program USC Cancer Center
9500 Gilman Drive, PO Box 0658
La Jolla, CA 92093-0658
Phone: (619) 534-3840 |
|
Coalition
for Skin Cancer Prevenion in Maryland
MedChi, The Maryland State Medical Society
1211 Cathedral Street
Baltimore, MD 21201
Phone: (410) 539-0872, ext. 340
Contact: Roberta Herbsta, Project Coordinator
E-mail: roberta@mail.medchi.org
Web page: www.SunGuardMan.org |
|
Nevoid
Basal Cell Carcinoma Syndrome Support Network
162 Clover Hill Court
Marlboro, MA 01752
Phone: (508) 485-4873 Fax: (508)
481-4072
Contact: Susan Charron, Executive Director |
| Sturge-Weber
Syndrome |
|
Sturge-Weber
Foundation
Post Office Box 418
Mt. Freedom, NJ 07970
Phone: (973) 895-4445 Fax: (973) 895-4846
Toll Free: (800) 627-5482
Web page:
E-mail: swfoffice@aol.com
Web page: www.sturge-weber.com
|
|
| -T- |
| Tuberous
Sclerosis |
|
National
Tuberous Sclerosis Association
8181 Professional Place, Suite 110
Landover, MD 20785-2226
Phone: (800) 225-6872 or (301) 459-9888
Fax: (301) 459-0394
E-mail: vicky.whittemore@ntsa.org
Web page: www.ntsa.org
|
| Tuberous Sclerosis Alliance
|
|
Tuberous
Sclerosis Alliance
801 Roeder Road, Suite 750
Silver Spring, MD 20910
Phone: (301) 562-9890 Fax: (301) 562-9870
Toll Free: (800) 225-6872
E-mail: info@tsalliance.org
Web page: www-tsalliance.org
|
|
| -V- |
| Vitiligo |
|
National
Organization for Albinism & Hypopigmentation
1530 Locust Street #29
Philadelphia, PA 19102-4415
Phone: (215) 545-2322 x128; or (800) 473-2330
E-mail: webmaster@albinism.org
Web page: www.albinism.org
|
|
National
Vitiligo Foundation
611 South Fleishel Avenue
Tyler, TX 75701
Phone: (903) 531-5469 Fax: (903) 531-1234
E-mail: vitiligo@trimofran.org
Web page: www.vitiligofoundation.org
|
| Vulvodynia |
|
National
Vulvodynia Association
P.O. Box 4491
Silver Spring MD 20914-4491
Phone: (301) 299-0775 Fax: (301)
299-3999
E-mail: matenva@graphcom.com
|
|
| -X- |
| Xeroderma
Pigmentosum |
|
Xeroderma
Pigmentosum Registry
Department of Pathology UMDNJ-New Jersey Medical School
185 South Orange Avenue
Newark, NJ 07103
Contact: W. Clark Lambert, M.D., Associate Professor
Phone:(973) 456-4405 |
|
Xeroderma
Pigmentosum Society
P.O. Box 4759 Poughkeepsie, NY 12601
Phone: (518) 851-2612 Fax: (518) 851-2612
Toll Free: (877) 977-2873
E -mail: xps@xps.org mailto:xps@xps.org
Web page: www.xps.org
|
|
|
