National Foundation for Ectodermal Dysplasias - NFED

Organization URL(s)

Other Contact Information

410 East Main P.O. Box 114
Mascoutah, IL 62258-0114
618-566-2020 (Voice)
618-566-4718 (FAX)


The National Foundation for Ectodermal Dysplasias, (NFED), was organized in order that accurate information on ectodermal dysplasias (ED) would be available to patients and their families dealing with this rare disorder. The Foundation's goals are to locate parents of ED children or adults affected by ED and to provide them with information and support, to assist the medical community in treating ED patients, to distribute financial assistance for medical and dental care and scholarships when possible, to aid families with the acquisition of insurance benefits, to provide referral services, and to assist with research projects. NFED is funded by donations.

Print Resources

Booklets: A Family Guide to Ectodermal Dysplasias; A Dental Guide to the Ectodermal Dysplasias; Skin, Hair and Nails Guide to the Ectodermal Dysplasias; EENT Guide to the Ectodermal Dysplasias; A Multi-Syndrome Guide to the Ectodermal Dysplasias. Serial publication: Newsletter, bi-monthly--news of family meetings, health tips, comments by members of the advisory board, a calendar of events and other pertinent information.

Review Date

Tuesday, Aug 26, 2008