The Power of Sharing Our Journey with EEC Syndrome

An NFED dad and self-described introvert finds the strength in being vulnerable and the power that comes from sharing your story. He and his family share how they are facing his son’s challenges with ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome and using it as an opportunity to raise awareness and funds.

A Parent’s Persistence Pays Off

Armenian eleven-year-old artist, Nika, has already had 4 sets of dentures thanks to her parent’s persistence and her dentist’s participation and willingness to go on the dental journey.

My Disorder Didn’t Affect My Dreams

Tova was diagnosed around age three with ectodermal dysplasia. Since then she has overcome bullies, dentists who should not have treated her, awarded the title of Miss Teen Dance of Chicago in high school, earned three graduate degrees, including a Ph.D. in human genetics and an M.D. Learn what having ectodermal dysplasia has taught her.

No Longer Feel Isolated With AEC Syndrome

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.

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.

Make time to visit with your NFED family

By Meredith Grimes Our first  National Foundation for Ectodermal Dysplasias (NFED) Family Conference was a life-changing week.  We were new to the diagnosis and feeling completely overwhelmed. We had a list of questions a mile long. What is hypohidrotic ectodermal dysplasia (HED), what does it mean to be a carrier, what do we need to…

Evan’s Story – Part III

By  Karen Forman (Note: The following story is part three in a series written by Karen Forman, the mom to an adult son, Evan, who is affected by hypohidrotic ectodermal dysplasia. Read part one and two. ) My toddler, Evan, loved his new teeth and was happy to show anyone who wanted to look. I noticed…

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