Thank you for your interest in the National Foundation for Ectodermal Dysplasias (NFED). This website will provide you with some basic information about the ectodermal dysplasia syndromes as well as the services the NFED has to offer. For more comprehensive information and support, you will certainly want to contact us at the NFED office.

Our vision is to enrich the lives of individuals affected by all forms of the ectodermal dysplasia syndromes. Our mission is accomplished in many ways. By offering accurate information and education to both lay and professional communities, providing services that meet the physical, emotional, informational and social needs of affected individuals and their families, and that help them lead a more normal life and supporting research on the ectodermal dysplasia syndromes, the Foundation continues to be an important resource for individuals and families affected by ED.

A listing of the booklets and resources available for purchase is available by clicking on Publications. Our bi-monthly newsletter, The EDucator, is devoted exclusively to the special interests and needs of the ectodermal dysplasia community. You will find a library of medical and dental guides, children's books and articles addressing specific issues.

The NFED Research Program has been instrumental in increasing understanding of the EDs, identifying genes and identifying improved treatments. If you are affected by ED, there are opportunities for you to participate in some project which can help all of us in the ED community.

If you are affected by ED or have an immediate family member who has been recently diagnosed and would and receive a new member packet, simply click on the Register with NFED on our home page to learn about the new family packets we can send to you and the services we can offer.

As you navigate through the pages of this website, you will see some of the most accurate and reliable information available about this group of rare disorders. However, please remember that one should always consult with a medical or dental professional for advice.

Mary K. Richter
NFED Executive Director