• American Porphyria Foundation
    P.O. Box 22712
    Houston, TX 77227
    713-266-9617
    fax# 713-871-1788
    E-mail: porphyrus@aol.com
    Website: www.porphyriafoundation.com
     Ms. Desiree Lyon, Executive Director

     
  • American Skin Association, Inc.
    150 East 58th Street, 33rd Floor
    New York, NY 10155-0002
    212-753-8260
    fax# 212-688-6547
    Email: info@skinassn.org
    Ms. Joyce Weidler

     
  • Dermatitis Herpetiformis
     Gluten Intolerance Group of North America
    15110 10th Avenue, SW
    Suite A
    Seattle, WA 98166
    206-246-6652
    fax# 206-246-6531
    Email: gig@accessone.com
    Web page: www.gluten.net
    Ms. Cynthia Kupper

     
  • Ehlers Danlos National Foundation
    6399 Wilshire Boulevard
    Suite 510
    Los Angeles, CA 90048
    323-651-3038
    fax# 323-651-1366
    Email: staff@ednf.org
    Website: www.ednf.org
    Ms. Linda Neumann-Potash                                   

 

  • Epidermolysis Bullosa Research Association of America (D.E.B.R.A.)
    40 Rector Street, 14th Floor
    New York, NY 10006
    212-513-4090
    fax# 212-513-4099
    Email:     staff@debra.org
    Website: www.debra.org
    Ms. Miriam Feder, Executive Director

     
  • Foundation for Ichthyosis and Related Skin Types (F.I.R.S.T)
    650 N. Cannon Avenue, Suite 17
    Lansdale, PA 19446
    800-545-3286
    or
    215-631-1411
    fax# 215-631-1413
    Email:     info@scalyskin.org
    Website: http://www.scalyskin.org/
    Ms. Jean Pickford, Executive Director

     
  • Lupus Foundation of America, Inc.
    1300 Piccard Drive, Suite 200
    Rockville, MD 20850-4303
    301-670-9292
    or
    800-558-0121
    fax# 301-670-9486
    Email: lupusinfo@lupus.org
    Website: www.lupus.org
    Ms. Deb Blom, Interim Executive Director
    Mr. Duane Peters, Director of Communications & Advocacy

     
  • National Alopecia Areata Foundation
    710 C Street, Suite 11
    San Rafael, CA 94901
    415-456-4644
    fax# 415-456-4274
    Email:     info@naaf.org
    Website: www.alopeciaareata.com
    Ms. Vicki Kalabokes, Executive Director

     
  • National Association for Pseudoxanthoma Elasticum
    3500 East 12th Avenue
    Denver, CO 80206
    303-355-3866
    fax# 303-355-3859
    Email: pxenape@napxe.org
    Website: http://www.pxenape.org/
    Mr. Al Ferrari, President

     
  • National Eczema Association for Science and Education (N.E.A.S.E)
    1220 SW Morrison Street, Suite 433
    Portland, OR 97205
    503-228-4430 or 800-818-7546
    fax# 503-224-3363
    Email: info@nationaleczema.org
    Website: http://www.nationaleczema.org/
    Robert O. McAlister, Ph.D., Executive Director

 

  • National Foundation for Ectodermal Dysplasias
    219 E. Main Street
    PO Box 114
    Mascoutah, IL 62258-0114
    618-566-2020
    fax# 618-566-4718
    Email: info@nfed.org
    Website: www.nfed.org
    Ms. Mary Kaye Richter, Executive Director

     
  • National Marfan Foundation
    382 Main Street
    Port Washington, NY 11050
    516-883-8712 or 800-862-7326
    fax# 516-883-8040
    Email: staff@marfan.org
    Website: www.marfan.org
    Ms. Carolyn Levering, Executive Director

 

 

© 2006 Joel A. Sabean, M.D.  Privacy Statement  Disclaimer