June 19, 2013
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Community Support for Skin Disorders in Online Resources

American Academy of Dermatology
930 E. Woodfield Road
Schaumburg, IL USA

Phone Number: 847-330-0230
Fax Number: 847-330-0050
Toll Free Number: 888-462-DERM
Website: www.aad.org

American Skin Association, Inc.
346 Park Avenue South, 4th Floor
New York, NY USA

Phone Number: 212-889-4858
Fax Number: 212-889-4959
Toll Free Number: 1-800-499-SKIN
Website: www.americanskin.org
E-Mail Address: info@americanskin.org

Degos Disease Support Group
United Kingdom

Phone Number: (44) 1903 787 737
Fax Number: (44) 1903 859 617
Website: www.degosdisease.com
E-Mail Address: judithcalder@wrencottage.co.uk

Dermatitis Herpetiformis - Gluten Intolerance Group
15110 10th Avenue SW, Suite A
Seattle, WA USA

Phone Number: 206-246-6652
Fax Number: 206-246-6531
Website: www.gluten.net
E-Mail Address: info@gluten.net

Dystrophic Epidermolysis Bullosa Research Association of America, Inc.
5 West 36th Street, Room 404
New York, NY USA

Phone Number: 212-868-1573
Fax Number: 212-868-9296
Website: www.debra.org
E-Mail Address: staff@debra.org

Ehlers Danlos National Foundation
3200 Wilshire Blvd, Suite 1601
Los Angeles, CA USA

Phone Number: 213-368-3800
Fax Number: 213-427-0057
Website: www.ednf.org
E-Mail Address: staff@edng.org

Foundation for Ichthyosis and Related Skin Types
P.O. Box 1074
Newport News, VA USA

Phone Number: 757-223-0795
Fax Number: 757-595-1842
Website: www.isdionline.org
E-Mail Address: ExDirISDI@aol.com

International Hyperhidrosis Society
520 Walnut Street Suite 1160
Philadelphia, PA USA

Website: www.sweathelp.org
E-Mail Address: info@SweatHelp.org

International Pemphigus Foundation
828 San Pablo Ave., Suite 210
Albany, CA USA

Phone Number: 510-527-4970
Fax Number: 510-527-8497
Website: www.pemphigus.org
E-Mail Address: pemphigus@pemphigus.org

Mycosis Fungoides Foundation
PO Box 374
Birmingham, MI USA

Phone Number: 248-644-9014
Fax Number: 248-644-9014
Website: www.mffoundation.org
E-Mail Address: info@MFFoundation.org

National Alopecia Areata Foundation
PO Box 150760
San Rafael, CA USA

Phone Number: 415-472-3780
Fax Number: 415-472-5343
Website: www.naaf.org
E-Mail Address: info@naaf.org

National Eczema Association for Science & Education
4460 Redwood Hwy, Suite 16D
San Rafael, CA USA

Phone Number: 415-499-3474
Fax Number: 415-472-5349
Toll Free Number: 1-800-818-7546
Website: www.nationaleczema.org
E-Mail Address: info@nationaleczema.org

National Foundation for Ectodermal Dysplasias
410 E. Main Street
Mascoutah, IL USA

Phone Number: 618-566-2020
Fax Number: 618-566-4718
Website: www.nfed.org
E-Mail Address: info@nfed.org

National Lichen Sclerosus Support Group
United Kingdom

Website: www.lichensclerosus.org
E-Mail Address: fabia.ivy@pop3.hiway.co.uk

National Marfan Foundation
22 Manhasset Avenue
Port Washington, NY USA

Phone Number: 516-883-8712
Fax Number: 516-883-8040
Toll Free Number: 1-800-862-7326
Website: www.marfan.org
E-Mail Address: staff@marfan.org

National Rosacea Society
800 S. Northwest Hwy., Suite 200
Barrington, IL USA

Toll Free Number: 1-888-NO-BLUSH
Website: www.rosacea.org
E-Mail Address: rosaceas@aol.com

National Vitiligo Foundation
700 Olympic Plaza Circle, Suite 404
Tyler, TX USA

Phone Number: 903-595-3713
Fax Number: 903-593-1545
Website: www.nvfi.org
E-Mail Address: info@nvfi.org

NBCCS - Nevoid Basal Cell Carcinoma Syndrome Life Support Network
PO Box 321
Burton, OH USA

Phone Number: 440-635-0078
Fax Number: 440-635-0078
Toll Free Number: 1-866-834-1895
Website: www.bccns.org
E-Mail Address: info@bccns.org

Nevus Outreach, Inc.
1601 Madison Blvd
Bartlesville, OK USA

Phone Number: 918-331-0595
Fax Number: 918-331-0595
Toll Free Number: 1-877-4-A-NEVUS
Website: www.nevus.org
E-Mail Address: info@nevus.org

Pityriasis Rubra Pilaris (PRP) Support Group
UK

Website: www.pcug.org.au/~jeremyb/PRP/

Pityriasis Rubra Pilaris Support Group
UK

Website: www.prp-support.org

Pseudoxanthoma Elasticum PXE International, Inc.
4301 Connecticut Ave NW, Suite 406
Washington, DC USA

Phone Number: 202-362-9599
Fax Number: 202-966-8553
Website: www.pxe.org
E-Mail Address: info@pxe.org

Scleroderma Foundation
12 Kent Way, Suite 101
Byfiled, MA USA

Phone Number: 978-463-5843
Fax Number: 978-463-5809
Toll Free Number: 1-800-722-4673
Website: www.scleroderma.org
E-Mail Address: sfinfo@scleroderma.org

Scleroderma Research Foundation
220 Montgomery Street, Suite 1411
San Francisco, CA USA

Fax Number: 415-834-9177
Toll Free Number: 1-800-441-CURE
Website: www.srfcure.org
E-Mail Address: charles_spaulding@srfcure.org

SkinCarePhysicians.com - American Academy of Dermatology
930 E. Woodfield Road
Schaumburg, IL USA

Phone Number: 847-330-0230
Fax Number: 847-330-0050
Website: www.skincarephysicians.com/

Sturge-Weber Foundation
PO Box 418
Mt. Freedom, NJ USA

Phone Number: 973-895-4445
Fax Number: 973-895-4846
Toll Free Number: 1-800-627-5482
Website: www.sturge-weber.com
E-Mail Address: swf@sturge-weber.com

TOMA Foundation for Burned Children - Ontario
P.O. Box 754, STN Don Mills,
North York, ON Canada

Phone Number: (416) 410-TOMA (8662)
Fax Number: 1 (877) 410-8662
Toll Free Number: (877) 410 - TOMA (8662)
Website: www.fondtomafound.org/english/index.htm
E-Mail Address: toma@fondtomafound.org

TOMA Foundation for Burned Children - Quebec
310 - 5051 Clanranald Ave.
Montreal, QC Canada

Phone Number: (514) 990-TOMA (8662)
Fax Number: 1 (877) 410-8662
Toll Free Number: (888) 990-TOMA (8662)
Website: www.fondtomafound.org/english/index.htm
E-Mail Address: toma@fondtomafound.org

Tuberous Sclerosis Alliance
801 Roeder Road, Suite 750
Silver Spring, MD USA

Phone Number: 301-562-9890
Fax Number: 301-562-9870
Toll Free Number: 1-800-225-6872
Website: www.tsalliance.org
E-Mail Address: info@tsalliance.org

Xeroderma Pigmentosum Society
437 Snydertown Road
Craryville, NY USA

Phone Number: 518-851-2612
Fax Number: 518-851-2612
Toll Free Number: 877-XPS-CURE
Website: www.xps.org
E-Mail Address: xps@xps.org

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