Resources- Specific Diagnosis Card Catalog- Ectodermal Dysplasia
Who to Contact
National Foundation for Ectodermal Dysplasias
219 East Main, Box 114
Mascoutah, Illinois, USA 62258-0114
618-566-2020
618-566-4718 (fax)
Web: http://www.nfed.org/
The National Foundation for Ectodermal Dysplasias (NFED) provides support and information to those affected by ED, assists the medical and dental profession with useful information on early diagnosis and treatment options, identifies medical facilities with multi-disciplinary treatment teams for ED, maintains a data base of health care professionals with expertise on this condition and conducts educational meetings for families and health care providers. NFED will also provide financial assistance to qualified families for medically necessary care, such as dental care, wigs and air conditioning. NFED has local chapters and prints a directory of members each year which identifies age, type of Ectodermal Dysplasia, and geographical location.
The Foundation publishes a newsletter, The Educator, ten times a year and has available educational materials and brochures including "A Dental Guide to The Ectodermal Dysplasias," "Genetic Testing and Gene Therapy," "Charley: The Story of a Child," and "Evan's New Teeth". They also have available several videos, call for additional information.
The National Foundation for Ectodermal Dysplasias is currently supporting studies to identify the genes responsible for ED, the mechanisms by which the genes cause the features of ED and the treatment of the condition. Information from these studies is made available to members. The Foundation provides information and referrals to other resources upon request. The Founation hosts a national conference.
Where to go to Chat with Others
Ectodermal Dysplasia
Support for people and families affected by the various forms of ectodermal dysplasia.
Learn More About It
Ectodermal Dysplasia Frequently Asked Questions
MEDLINEplus Medical Encyclopedia: Ectodermal dysplasia
Ectodermal Dysplasia
from PedBase
Links
National Foundation of Ectodermal Dysplasia
Ectodermal Dysplasia Society
United Kingdom
Site designed and maintained by proFilesInteractive