National Foundation for Ectodermal Dysplasias

Filing Period

Jan 1, 2011 to Dec 31, 2011

Signed

May 14, 2012

Return Version

2011v1.2

Gross Receipts

$1,065,155

Mission

Major Activities

Activity 2

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 16 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.

Activity 3

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.

Filer

EIN

37-1112496