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

Ectodermal Dysplasias Awareness Month


Get Involved!

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

  • You may know first-hand how much easier your day-to-day life could be if your community understood what you experience.  The quickest and easiest way to teach them is to contact your newspaper or local television station to do an interview and share your story.
  • Download press release.
  • Download tips for how to approach media.

Share Online

  • Download our logo, banner and other materials and use online or in printed materials.  Please use them on Facebook, Twitter, Pinterest, blogs, websites, signs, flyers or where you will be participating during February.  
  • 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, Facebook page 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.
  • 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 fundraisng 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