NATIONAL FOUNDATION FOR ECTODERMAL

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.