Amazing! Wonderful! Informative! Fantastic! Life-Changing! Educational Empowering! Fun! Fascinating! What word best describes our week in Washington D.C.? They all do! For me, it is hard to really describe the impact that week made on our entire community.
It’s definitely a busy summer for the National Foundation for Ectodermal Dysplasias (NFED)! If you follow our communications, you know we are going to be in Washington D.C. in July for the Family Conference and a historic first, Ectodermal Dysplasias Advocacy Day on Capitol Hill. Those are both incredibly important and major events for us….
By Richard A. Lewis, M.D., M.S. Many different disorders of the eye affect the stability of the tear film; an unstable tear film is a hallmark of “dry eyes”. Proper classification of the cause of a tear deficiency is critical for several reasons: Appropriate therapy depends on proper diagnosis; Certain conditions of dry eyes are…
The 50+ ectodermal dysplasias are recognized and named based on the specific combination of symptoms shown in affected individuals. The pattern of these features is important when a physician tries to make a formal diagnosis. In some types, teeth may be missing and nails may be defective, while in another type there may be missing…
Ectodermal dysplasias caused by mutations in the p63 gene include the following: AEC and EEC Research Overview By Maranke Koster, Ph.D.East Carolina University AEC and EEC are ectodermal dysplasias caused by mutations in the p63 gene. Although only AEC has historically been linked to the presence of skin erosion, data from the NFED’s Ectodermal Dysplasias…
Synonyms Acro-Dermato-Ungual-Lacrimal-Tooth (ADULT ) syndrome ADULT syndrome belongs to the TP63 family of ectodermal dysplasias that also includes ectrodactyly- ectodermal dysplasia-cleting (EEC) syndrome, limb-mammary syndrome (LMS), and ankyloblepharon-ectodermal dysplasia-cleft lip and/or palate syndrome (AEC). The clinical findings of ADULT syndrome can overlap with those of other ectodermal dysplasia syndromes and are variable in presentation. This…
We were proud to recognize the following individuals and families for the amazing contributions they have made to families affected by ectodermal dysplasias and the NFED. We honored them at our 35th Anniversary Celebration on July 22nd in St. Louis. Outstanding Service Award – Timothy J. Fete, M.D., M.P.H. For 23 years, Dr. Time Fete has…
We just wrapped another life-changing, heartwarming, spirit-lifting Family Conference in St. Louis! What an amazing conference from start to finish. The conference started off with Jack Kriz riding his bike in from Kansas City. He rode 288 miles of bike riding in the awful heat. What dedication to do this ride to raise money for the…