National Foundation For Ectodermal Dysplasias

Treatment - nfed's patient care council, comprised of medical and dental experts, oversees the nfed's initiatives to improve treatment of ectodermal dysplasias. The nfed teaches care providers how to diagnose and treat the rare disorders through professional symposia and grand rounds at universities. The nfed advocates for improving access to care with sponsoring legislation to cover congenital anomalies, and collaborating with universities, government, patient health organizations. Affected individuals can receive more affordable care from experienced teams of dentists in treatment of ectodermal dysplasias at nfed dental treatment centers in the u.s. The nfed also helps families pay for needed care through the treatment assistance program and insurance coaching.

Research - nfed's scientific advisory council oversees the nfed's research initiatives, aimed to improve the health and quality of life of affected individuals by finding management solutions and, eventually, finding cures for ectodermal dysplasias. The nfed advances research through advocacy and partnerships with organizations such as the national institute of health. The nfed provides seeds funds to researchers, provides them with access to affected individuals, and shares information to launch larger projects. Nfed is developing a web-based ectodermal dysplasias international registry to serve as a repository of genetic and clinical information and facilitates communication among scientists who strive to advance research on ectodermal dysplasias. The nfed also sponsors scientific meetings to increase understanding of the disorders.