Volunteers are needed for ongoing research to design novel therapies for the treatment of skin and cornea lesions that occur in individuals with ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome or ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. The National Foundation for Ectodermal Dysplasias has supported this research led by Maranke Koster, Ph.D. at University of Colorado Denver.
Born This Way
Suzanne Brown ignored her painful eyes for years, always thinking, “I’m fine.” But she wasn’t fine. In 2017, she noticed that she was going to bed earlier in the evening because “my eyes were done.” Affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome, Suzanne found a treatment that changed her life.
Top 10 Syndromes that Affect NFED Families
Learn which of the 180+ different types of ectodermal dysplasia are the most common among NFED families. Update your profile with the type that affects your family. You and your love ones count!
A Cause Worth Fighting For!
Jeanne Wang wanted to give back to the organization that helped her when her son was diagnosed with a rare syndrome called EEC. She quickly found that education and raising awareness empowered her!
Suzanne’s Story with EEC Syndrome
Suzanne lives in Pennsylvania with her husband, Will, and their children, Caitlin and Tyler. Mom and son are both affected by ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. This tenacious educator grew up never knowing that her symptoms were actually a part of a genetic disorder. In this interview, Suzanne discusses growing up without a diagnosis, finding her…