What causes skin or corneal erosions in AEC or EEC syndrome? The NFED has been collaborating with Dr. Maranke Koster and her research lab to find that answer and ultimately develop new treatments. Read the latest update and what they are learning!
The Shimchick family has faced many challenges caused by ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome. Denyse and her three children are all affected. Together, they have been through 217+ surgeries! Despite their medical needs, the family has made volunteering a key part of their lives. Find out how they strive to help others.
If your baby has been diagnosed with ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome or if you suspect he or she might be affected, you have come to the right place! Here are some key things to know and resources to help you care for your baby.
Do you have AEC/Hay Wells/Rapp Hodgkin syndrome? This webinar is your chance to connect with others, ask questions and share your story!
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.
By Maranke Koster, Ph.D. The long-term goal of our research is to design novel therapies for the treatment of skin and cornea lesions that occur in ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) and ectrodactyly-ectodermal-dysplasia-clefting (EEC) patients. In the past, many of you have donated skin biopsies to support this research. These skin biopsies were used…
Learn about the Brown family’s journey when their daughter, Erin, was diagnosed with Ankyloblepharon-Ectodermal Defects-Clefting (AEC) syndrome. They also talk about how their NFED family has been a tremendous help over the last 5 years.
By Maranke I. Koster, Ph.D. and Peter J. Koch, Ph.D., University of Colorado School of Medicine Since our last research update, we have been hard at work to understand the basis for skin and eye abnormalities that occur in patients affected by ankyloblepharon-ectodermal defects-clefting (AEC) syndrome and ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome. These two ectodermal dysplasias are caused…