National Foundation for Ectodermal Dysplasias

The Ectodermal Dysplasias Registry invites people with these disorders and their family members to contribute information for research. The National Foundation for Ectodermal Dysplasias provides education and lifelong support to affected individuals and families. Its resources include information about treatment options, educational events, and connections with other families. The foundation also offers personalized support, particularly to families of recently diagnosed children, and partners with doctors and dentists on care. Advocacy is another part of its work. The organization promotes research into ectodermal dysplasias and shares information about studies and clinical trials, including the Edelife prenatal treatment trial for XLHED. Based in Fairview Heights, the foundation describes itself as the only U.S. advocacy organization dedicated to people living with ectodermal dysplasias.