National Foundation For Ectodermal Dysplasias

Causes: Health, Patient & Family Support

Mission: To empower and connect people touched by ectodermal dysplasias through education, support, and research.

Programs: Support - the 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. The foundation publishes high quality information to provide families with knowledge that will increase their quality of life. Information is shared through the first connect program, a web site, medical/dental guide series, and conferences. The national family conference is the foundation's hallmark program bringing entire families together to learn, share and network with one another and with expert care providers. Affected children and their siblings attend kids camp at the conferences where they participate in educational and social activities with other children like them to develop self esteem. The foundation provides financial assistance to individuals to attend the family conference and academic scholarship for post-secondary education to recognize the achievements of our youth. The nfed's family to family network connects families with a caring liaison in their region who can provide moral support, information and practical advice, guidance and resources.

treatment - medical and dental experts comprise the patient care council which oversees the nfed's initiatives to improve treatment of ectodermal dysplasias. The foundation 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 by collaborating with universities, government, professional and other patient-based health organizations. Affected individuals can receive more affordable care from experienced teams of dentists at one of 21 nfed dental treatment centers in the u. S. The foundation also helps families pay for needed care through the treatment assistance program and insurance coaching.

research - the 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 foundation advances research through advocacy and partnerships with organizations such as the national institutes of health. The nfed provides seed funds to researchers, provides them with access to affected individuals, and shares information to launch larger projects. The web-based ectodermal dysplasias international registry serves as a repository of clinical information and facilitates communication among affected individuals, clinicians involved in their treatment and scientists who strive to advance research on ectodermal dysplasias. The foundation also sponsors scientific meetings to increase understanding of the disorders.