Ectodermal Dysplasia Treatment Videos Now Available

The one thing all our families want is information about ectodermal dysplasia treatment. You want to know what to expect for you or your child. You are seeking treatment options. You are looking for answers. That’s where the National Foundation for Ectodermal Dysplasias comes in. We now have six free videos of educational workshops from our 2017 Family Conference available to watch. You can hear from our experts, see their presentations and learn.

What better time to raise money for the NFED?

By Brian Brubaker   Overheating hasn’t been something that Kindergartner Emily Rose Brubaker has had to deal with very much so far growing up in Alaska. Normally in Alaska, hyp-O-thermia is much more common that hyp-ER-thermia. But in the middle of the Alaska winter, when the Iditarod sled dog race is about to start, the…

The Missing Piece of the Puzzle

After nearly two years of unexplained fevers, chronic respiratory illness and feeding issues, Mom, Lindsay James, was tired. Thankfully, her google search led her to the NFED which became a beacon and filled their lives with light.

I Love the Family Conference

By Jason D’Angelo I love the Family Conference. It’s my second family and after as many times I have been, I still get so much out of it. I was fortunate enough to bring my girlfriend, Tiff (pictured above), last year which was a huge step in my life. She looks forward to going again…

A Mind-Body Duelist

Twenty-six-year-old Christopher Barbey recently wrote about his experience with hypohidrotic ectodermal dysplasia in an article published by the Journal of American Medical Association. Titled Mind-Body Duelist, Chris explores how emotionally difficult it was for him as a teen. He was confronted with the need for dental implants instead of traditional dentures to replace his missing…

We Were So Scared

By Jill Dolde My son Nathan (Nate)  turned seven on November 19th. He has blessed me and my husband in so many ways. Nathan is our only child. As first-time parents, we were scared hearing  something does not look when your child was born. His scalp was very dry, flaky and red right after birth….

How This Teen Takes On Life With Ectodermal Dysplasia

By Kayte Speegle Hi. My name is Kayte. I am one of six in my family affected by hypohidrotic ectodermal dysplasia. I would love to say that it is “nothing,” but it is definitely a lot of something. My grandpa was the first of the family to be diagnosed with ectodermal dysplasia. Then, there was…