National Foundation for Ectodermal Dysplasias

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

CALL US AT (618) 566-2020

We're here to help

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 info@nfed.org.
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.

Andy Trevino’s Story

August 18, 2010

Traveled 3,000 miles for a miracle...

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Tim Smith’s Story

August 18, 2010

Excels in art and football...

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Madison Hoffman’s Story

August 18, 2010

Helps her parents see the light...

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Joe Barone’s Story

August 18, 2010

Knows you’re never too old to get the smile you want...

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Jayden Clark’s Story

August 17, 2010

Was born at the right time to the right doctor..

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Jennifer Zwirn’s Story

August 17, 2010

She is no longer "different"...

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Vanni Family’s Story

August 17, 2010

Learns how to take down barriers...

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Najah Carlise’s Story

August 17, 2010

As unique as a butterfly...

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Allyson Kelso’s Story

August 17, 2010

The joy of our life...

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The Hamm Family’s Story

August 17, 2010

The joy of our life...

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