The National Foundation for Ectodermal Dysplasias (NFED) is the worldwide expert on ectodermal dysplasias and the only advocacy organization in the United States dedicated to those living with these disorders.


We offer a range of educational resources and events to meet the changing needs of those affected by the different types of ectodermal dysplasias. And, by connecting you with other families like yours, we give you the opportunity to learn from one another.


We provide lifelong support for individuals and families affected by ectodermal dysplasias, including:

  • Offering personalized service and support to families affected by ectodermal dysplasias, particularly those with recently diagnosed children
  • Helping families understand currently available treatment options
  • Partnering with doctors and dentists to ensure that the most effective care is being offered
  • Working with families to find appropriate financial assistance
  • Helping secure insurance coverage for dental treatment related to ectodermal dysplasias, including advocating to Congress for the Ensuring Lasting Smiles Act

Love the NFED! They have always been there for any questions I’ve ever had. Thank you for all your hard work & dedication!– Josie


We encourage and support medical, dental, genetic and other ectodermal dysplasia–related research to improve the health and quality of life of everyone living with ectodermal dysplasia. Our ultimate goal is to find a cure.

We are members of

National Health Council
Member of NORD
Rare Foundation Alliance Member