The Most Beautiful Sight

The Stollers spent the first few years of their daughter, Kambree’s life, trying to figure out what was causing all of her different, possibly unrelated, symptoms. When Kambree was finally diagnosed with ectodermal dysplasia, professionals and genetic testing couldn’t pinpoint which type she might have. Until an NFED Family Conference changed their life. They found something they didn’t realize they were seeking.

Made With Love

With two young sons affected by hyphidrotic ectodermal dysplasia, Anissa Morgan has faced insurance denials, numerous hospitalizations, child care issues and finding doctors to treat them. That’s on top of learning how to care for their varied symptoms. But this determined mother has learned lessons along the way and is teaching her sons that they are well loved. Learn more here.

This Is Not Some Hollywood Smile Issue

A Canadian mother trusted her instincts and had her son genetically tested when he didn’t develop all of his teeth. Their journey led to a diagnosis of odontoonychodermal dysplasia, a rare type of ectodermal dysplasia. It also explained symptoms for other family members. Read what Jamie Critchell is determined she must do now.

You’ll Never Be Alone Again

By Maureen Having ectodermal dysplasia can be hard.  Especially growing up. I had never met another person with ectodermal dysplasias until I went to my first National Foundation of Ectodermal Dysplasias (NFED) Family Conference in 2014 at the age of 46. I had always felt alone. I don’t know which type of ectodermal dysplasia I…

Is There a Genetic Test For Your Type of Ectodermal Dysplasia?

The National Foundation for Ectodermal Dysplasias, just 25 years ago, began supporting research.  The research was to identify the genes which cause the 180+ ectodermal dysplasias. Those efforts have paid off. We know many of the causative genes for many of these conditions, but not all. We still have lots of work to do! One of…