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

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Ectodermal Dysplasias Awareness Month

Living with Ectodermal Dysplasias

For 12 years, the National Foundation for Ectodermal Dysplasias has led the observance of Ectodermal Dysplasias Awareness Month. The theme for this year is “Living With Ectodermal Dyspalsias.”  In celebrating Ectodermal Dysplasias Awareness Month, we hope to raise positive awareness around the ectodermal dysplasias, spread the word about the Newborn XLHED Clinical Trial, and increase understanding of what life is like for someone affected. While people affected by the conditions have challenges, they can and do live the lives they dreamt of.

Do Something Each Day to Raise Awareness

Enter Our Photo Contest

Share Your Story 

  • Tell us about your life with ectodermal dysplasia in 500 words or less. We will share these stories throughout February.  You could tell about the challenges you have overcome, what you have learned from being affected by the condition, or any other interesting aspect of your story. Be sure to include photos. We can’t wait to hear them!  Click here to submit your story now.
  • If you want to tell your story via video, we’d love to show that, too. Email your brief video to Jodi Edgar Reinhardt at the NFED or post it to our Facebook page.
  • Write a blog telling your story and put a link to it on our Facebook page.

Educate Your Community

Share Online

Download Profile

Download Social Profile

Download Facebook Banner #1

Download Facebook Banner 1

Download Facebook Banner #2

Download Facebook Banner #2

Download Twitter Banner

Download Twitter Banner

Download and Personalize Your Own Banner

Download and Personal Banner


  • Use #EctodermalDysplasiasAwarenessMonth on all of your posts. This will help strengthen and unite our visual presence online.
  • Use an Ectodermal Dysplasias Awareness Month banner on your Web site or blog. Link it to or to this Ectodermal Dysplasias Awareness Month webpage.
  • Facebook - Like the NFED Facebook page, and participate in the conversation about Ectodermal Dysplasias Awareness Month. Repost our posts on your own timeline.
  • Twitter - Follow Ectodermal Dysplasias Awareness Month on Twitter (@NFED_org). Retweet us and use the hashtag #EctodermalDysplasiasAwareness.
  • You Tube - Watch the videos, comment and link to the videos, updload your own awareness video to our Ectodermal Dysplasias channel.

Host an awareness or fundraising event. 

  • Email Lea at the NFED office or call her at 618-566-2020 to learn more. 

Wear your NFED apparel.   Visit our online store to order yours today!


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The National Foundation for Ectodermal Dysplasias (NFED) is a qualified 501(c)(3) nonprofit organization.
The EIN is 37-1112496. The NFED is registered in all states where applicable.
6 Executive Dr., Ste. 2, Fairview Heights, IL 62208-1360