National Foundation for Ectodermal Dysplasias

Ectodermal dysplasias are rare genetic disorders affecting three of every 10,000 babies born today. These disorders alter the ectoderm, the outer layer of tissue in a developing baby. Development and function of hair, teeth, nails and sweat glands are hindered. Other parts of the body might also be affected. These individuals may experience secondary symptoms such as cleft lip and palate, skin erosion, missing fingers and toes, hearing and vision challenges, respiratory infections, and other issues.

Since these disorders are so rare, families feel confused or overwhelmed by the information about the disorders and how it affects your body. They are often frustrated by the lack of information available for particular syndromes. The National Foundation for Ectodermal Dysplasias (NFED) is the only advocacy organization in the US that helps these families by offering them the education, support and research that they need.

The beginning of the NFED happened when Mary Kaye Richter's young son was not developing any teeth. Her dentist diagnosed him with the rare disorder called hypohidrotic ectodermal dysplasia. Medical textbooks and care providers provided little information and painted a bleak future, much of which the NFED later documented to be false.

Contact with dental schools across the US identified a dozen other affected families. With numerous questions and few answers, the families realized an organized effort was needed. The NFED was created in 1981, when Mary Kaye and these 12 families affected by ectodermal dysplasias organized and founded the organization in Mascoutah, Illinois.

In its first years, the NFED gathered and published accurate information on the conditions and established a support network of affected families. In 1985, the NFED expanded its mission to funding seed grants for ectodermal dysplasia research and providing researchers with access to clients. Two years later, the NFED began providing financial assistance for medical and dental care through the Treatment Fund, which is now called the Treatment Assistance Program.

- In 1995, the L. Marie Heard Education Scholarship Program was established to help affected individuals attain post-secondary education and the Dental Implant Program began.
- In 1996, a successful International Symposium on the Ectodermal Dysplasias was held at the National Institutes of Health.
- A 2002 Skin Erosion Workshop co-sponsored by Saint Louis University described the often life threatening condition experienced by children affected by Ankyloblepharon-Ectodermal Dysplasia-Clefting (AEC) syndrome and outlined treatment protocols. Children and adults with this syndrome could have chronic, recurrent erosions on the scalp, palms, and soles. Scalp erosions can be complicated by life-threatening infections in infancy which often heal with atrophic/cribiform scarring.
- An expanded International Research Symposium on AEC happened in 2006 with Texas Children's Hospital and Baylor College of Medicine co-sponsoring and enabled us to collect extensive data, biopsies and hair samples on 25 individuals affected by AEC for analysis and research.
- During the past 36 years, the NFED has funded more than $2.5 million in research at 40 centers around the world. Funded research projects have identified genes for several ectodermal dysplasia syndromes.

Helping affected families access quality and affordable oral health care has been an ongoing focus at the NFED. In the early years, it meant providing information to families that children could successfully wear dentures. Over the years, efforts expanded to educating professionals, maintaining a database of names of care providers and funding treatment. Thousands of copies of NFED publications have been mailed to professionals and professional symposia on the ectodermal dysplasia syndromes have been sponsored at seven universities. The NFED has provided families with more than $1.5 million in assistance for needed dental and medical care as well as hair prosthetics and air conditioners.

Our current programs include the following:

- Support programs - Our Family Support Council (comprised of family members and affected individuals) oversees the NFED's support programs that seek to empower and connect individuals affected by ectodermal dysplasias and their families. This program allows us to publish high quality information to provide families and children with knowledge that will increase their quality of life. Information is shared through the First Connect program, our children's books, website, medical/dental guide series, and our conferences.

- Research - The Scientific Advisory Council oversees NFED's research initiatives, aimed to improve the health and quality of life of affected individuals by finding management solutions and eventually cures for the different ectodermal dysplasias...