National Foundation for Ectodermal Dysplasias

Our mission is to empower and connect people touched by
ectodermal dysplasias through education, support, and research.

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Meet Our Families

Joe’s Story

July 17, 2015

So there I was, sitting in the examination room at the doctors, awaiting the inevitable. It always happened when I saw a new doctor.

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Same Birthday. Same Diagnosis.

June 01, 2015

My three-year-olds, Luna and Alicia, are two girls from Florida who share birthdays and a diagnosis. The girls may both be affected by hypohidrotic ectodermal dysplasia (HED), but their individuality outshines their symptoms.

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Bentley’s Story

May 11, 2015

Bentley was born in October 2011. At birth, he had peeling skin all over his body. The doctors explained to me that this was from him being in the womb too long. He was a week late.

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Jeremiah’s Story

May 04, 2015

Hi! My name is Jeremiah. I am five years old and I have hypohidrotic ectodermal dysplasia (HED). I was one year old when I was diagnosed at the University of Maryland Baltimore.

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Brennyn’s Story

April 16, 2015

My daughter, Brennyn, has a rare form of ectodermal dysplasia called ADULT syndrome.  That stands for acro–dermato–ungual–lacrimal–tooth syndrome. 

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Our Story: Piecing It Together

March 19, 2015

My first recollection of signs of Laurel’s syndrome was at her first office appointment when the pediatrician instructed me to be careful with her skin.

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This Little Piggy

February 25, 2015

Our firstborn child, Mary Emma, loved for us to play “This Little Piggy.” The day our son Michael was born, I never looked at “This Little Piggy” the same again.

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Celebrating Our Victories

February 12, 2015

Our daughter, Ryen, was born with a very rare condition called ankyloblepharon-ectodermal defects-cleft lip/palate (AEC) syndrome. She was born full term with a cleft palate, missing patches of skin from her scalp and hands, abnormal nails and ophthalmologic issues. In addition to these, she will likely have issues involving her sweat glands, teeth development and hair development. Her hearing will also be monitored frequently.

This family feature is a part of our "Living with Ectodermal Dysplasias" series for the NFED's Ectodermal Dysplasias Awareness Month 2015. If you would like to submit your story for the series, go here.

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Our Little X-Man

February 09, 2015

Liam  is 17 months old and has x-linked hypohydrotic ectodermal dysplasia. As his mother, I am a carrier and had absolutely no idea until he was diagnosed. Liam was born healthy but with severe dermatitis/eczema.

This family feature is a part of our "Living with Ectodermal Dysplasias" series for Ectodermal Dysplasias Awareness Month 2015. If you would like to submit your story for the series, go here.

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My Name is Ella. I Am Unique.

February 04, 2015

My name is Ella. I am not simple. I am unique. I was created unique by God himself. I am happy, always happy. If I could talk, I would tell you about my incredible journey so far. But I am only two.  

This family feature is a part of our "Living with Ectodermal Dysplasias" series for Ectodermal Dysplasias Awareness Month, 2015.

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