National Foundation of Ectodermal Dysplasias

Jodi Edgar Reinhardt visited this evening’s meeting of the Belleville Kiwanis Club & updated members with news of some of the advancements and new challenges that NFED is addressing in its work for families with loved ones impacted by one of the many types of ectodermal dysplasias.

Today NFED provides information & resources for 8,200 families. It is a grassroots organization with a small staff who are passionate about making a difference for those facing challenges caused by an ectodermal dysplasia and future generations. Through research that has been funded by NFED & their donors, scientists have determined that ectodermal dysplasia is the result of a lack of a specific protein in a gene. The gene varies with the type of ectodermal dysplasia. Scientists have also successfully been able to create the protein. Their work is far from done.

NFED and the Belleville Illinois Kiwanis Club share a long-standing relationship which predates the formation of the NFED organization. The Belleville Kiwanis Club met the mother who was looking for information for her young son & others with similar challenges. The members of the Belleville Kiwanis Club recognized the need for the organization that this mother was trying to form and gave her the initial donation to help kick-start the organization. The club has remained strong supporters of NFED & takes great pride in knowing that so many families have been able to find support & resources as the result of those donations.

If you know a family facing a diagnosis of an ectodermal dysplasia or for additional information about these conditions, please visit

T: 618-566-2020  E: INFO@NFED.ORG  W: WWW.NFED.ORG