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.

Please email your story to
Subject line should read: NFED Inspirational Story for Web site

Please include your name (and age, if desired). If you have them, please include 1 or 2 photos in jpeg file format.

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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From Feeling Alone to Feeling Confident

December 18, 2013

Hannah Haseloff grew up in a supportive, loving family in Austin, Texas; but often she felt awkward, different. 

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Winning Smile

June 13, 2013

Tim said that having his teeth made it easier to make presentations and do interviews while pursuing a college degree.Tim Smith has ectrodactyly-ectodermal dysplasia-clefting (EEC) syndrome, but you would hardly notice just by looking at him today.

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Living With the Challenges of Skin Erosion

April 01, 2013

While many parents would be understandably saddened to find out their baby was not born 100 percent healthy, Jennifer and Justin Hagerty had only happiness in their heart when their son, Joshua, came into this world.

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Crowning Glory: My Dental Journey

April 01, 2013

I was born in Mankato, Minn., on a cold January day in 1980. At birth, my mother was told by the hospital staff I was very tiny and something was “wrong” with me. Eventually, they diagnosed me with hypohidrotic ectodermal dysplasia. 

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Growing up with Goltz Syndrome

November 28, 2012

Many of us can reminisce on the many times a Band-Aid saved the day making all scrapes, scratches and boo-boos better. The sticky friend helping most children doesn’t hold the same meaning for 7-year-old Emma Miller.

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I Found the Magic in Me

November 28, 2012


We all have our own stories about how we came to become part of the NFED family. This is my story.

I was born in January of 1982 with an extra digit or a second "thumb" on my right hand.  Both thumbs and my index finger were abnormal and both the extra thumb and index finger were missing nails.  Otherwise, I was a seemingly healthy child. 

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