National Foundation for Ectodermal Dysplasias

  • 410 East Main Street
    Mascoutah, IL 62258-0114
  • 618-566-2020

The mission of the National Foundation for Ectodermal Dysplasias (NFED)  is to empower and connect people touched by ectodermal dysplasias through education, support, and research.  The ectodermal dysplasias are 175+ rare, genetic disorders with complex symptoms ranging from mild to life threatening. The NFED is a recognized leader in the ectodermal dysplasias community and known for providing comprehensive services with loving care to more than 6,900 individuals affected by ectodermal dysplasias and their families in 80 countries. The Foundation’s treatment initiative seeks to reduce the barriers to access to dental care for families through education and a growing network of Dental Treatment Centers.  Our research program serves as a catalyst for finding better treatments and ultimately, cures for the syndromes.

This organization has completed the National Health Council’s Standards of Excellence Certification Program and meets the highest standards of accountability, ethical practice, organizational effectiveness, and good public stewardship. 

To learn more, click on the links below.