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

Share Your Inspirational Story

Do you have a story to share about your experience with ectodermal dysplasia? We welcome your feelings and thoughts about how you have come to terms with being a parent of a child with ectodermal dysplasia, being an adult with ectodermal dysplasia or being a young person with ectodermal dysplasia. Once we receive and review your submission, we will let you now if and when it will be posted here.

Share your story now.

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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Baby Timmy Participates in Research Study

June 19, 2014

Timothy Toupin III is an adorable six-month-old baby boy who has x-linked hypohydrotic ectodermal dysplasia (XLHED).  Shortly after he was born he was admitted to the University of California at San Francisco Medical Center to become one of the first infants to take part in a clinical trial conducted by Edimer Pharmaceuticals to test a possible treatment for XLHED.

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Why The Bylsma Family’s Returning to this Year’s Family Conference

May 07, 2014

Gord and Ruth Bylsma and their three children, Orion, Whitney, and Quinn, have not only been dealing with ectodermal dysplasias for the last few decades, but they also have attended close to a dozen National Foundation for Ectodermal Dysplasias (NFED) Family Conferences.

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Love Yourself for Others to Love You

April 17, 2014

Harvey Legg is 79-years-old and describes his life as a success. He had a family, a long career in the aerospace industry, and traveled the world.  He says everything he wished for as a child came true, and he is “happy with the way I look and the way I am.”  

But this wasn’t always the case.

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Mommies and Me

March 24, 2014

          “Just try a Mommy and Me group,” my therapist told me.  “Pick one that feels safe and see how it goes.”  So I did.  I signed up for a group at a nearby synagogue.  Because Jacob needed to socialize.  In reality, I needed to socialize; Jake couldn’t have cared less.

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