Thoughts from the International Conference on Ectodermal Dysplasias

In May I had the honor of representing the NFED at the 6th International Conference on Ectodermal Dysplasias. This conference was held in breathtaking Oslo, Norway on May 27-30. The sessions were both a wonderful opportunity to learn, and a way to network with experts on ectodermal dysplasias from around the world. There were 101 participants…

Meet the Kelsos & Huxmans!

The Kelso and Huxman families met in 2006 at the NFED Family Conference in St. Louis. Both have children affected by EEC syndrome and they found an instant connection with one another. Before that conference had ended, they were finishing each other’s sentences; their children were referring to themselves as “cousins”; and they were making…