To empower and connect people touched by ectodermal dysplasias through education, support and research.
The National Foundation for Ectodermal Dysplasias will be known
- As a recognized leader among health-related nonprofit organizations;
- for providing comprehensive services with loving care to individuals affected by ectodermal dysplasias and their families;
- for helping individuals and families benefit from early diagnosis and care; and
- for spearheading research that ultimately develops cures.
In 1981, Mary Kaye Richter and 12 other families affected by ectodermal dysplasias organized and founded the National Foundation for Ectodermal Dysplasias (NFED) in Mascoutah, Illinois. Mary Kaye’s toddler, Charley, had been diagnosed with hypohidrotic ectodermal dysplasia, and she was looking for answers on how to best take care of him.
The NFED has grown considerably since the early 1980s, a time when little was known about the rare conditions and the medical literature cited only a half dozen affected individuals in the United States. Today, we serve more than 8,800 families worldwide.
When you are missing some or all of your teeth, smiling, eating and talking are not easy. Here at the NFED, we believe every person deserves a smile. We work with families to help them understand treatment options, to increase their access to care and to find financial assistance for that care. We have a network of Dental Treatment Centers, offer a donated implant program with the help of Straumann, educate care providers through symposia, and have provided clients with more than $1.5 million in assistance for needed care.
Perhaps our greatest success comes from providing individuals and families affected by ectodermal dysplasia with a place to turn for reliable information, support and hope. We publish high-quality information to empower families with knowledge that their doctors often cannot give. We stand with open arms to welcome the family who has just been diagnosed, to answer their questions, and to allay their fears. The Foundation educates families that anything is possible for the person who is affected by ectodermal dysplasia. The conditions come with challenges, but with support and encouragement, families can expect a bright future.
The Foundation is committed to advocating for families in the United States to get access to dental care. We are working vigilantly to get a federal law, the Ensuring Lasting Smiles Act passed that would mandate private insurance companies to provide medically necessary dental care for all congenital anomalies.
The NFED is also dedicated to finding a cure. We have funded more than $3.6 million in research at 40+ centers around the world and sponsored numerous scientific conferences for specific syndromes and classification. NFED-funded research projects have identified genes for numerous ectodermal dysplasias, established treatment protocols and characterized many of the syndromes.
Mary Kaye retired as executive director in 2010. Today, Mary Fete leads the NFED and carries out the vision that the first dozen families had back in 1981: to be a resource for the ectodermal dysplasias community and to assure its families that they are never alone!