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

I  Speak Up for Ectodermal Dysplasias


Be Heard. Inspire Others. Be Yourself.

For 13 years, the National Foundation for Ectodermal Dysplasias has celebrated Ectodermal Dysplasias Awareness Month. The theme for this year is “I Speak Up for Ectodermal Dysplasias.”  We hope to raise positive awareness around the ectodermal dysplasias and increase understanding of what life is like for someone affected. Help us tell the world about our amazing families and the rare, genetic condition that affects them.

Watch and Share Our New Awareness Video!


DIY Calendar

Do Something Each Day to Raise Awareness

Download the Ectodermal Dysplasias Awareness Calendar for ideas you can do each day.





Share Your Story

Share Your Story

Speak up! Tell us about your life with ectodermal dysplasia in 800 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.


Do You Blog?

Educate Your Community

Write a blog telling your story and discussing  Ectodermal Dysplasias Awareness Month and put a link to it on our Facebook page.



Contact Your Local Newspaper or TV Station

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.



Hang This Awareness Flyer In Your Community

Hang Flyers in Your Community

Download, print and post this flyer at school, church, library, your office, etc.




Download Our Social Media Guide

Share Online - NEW! Download our Social Media Guide

You can educate your friends and family and their friends and family by posting content on social media. It's free and we just made it easier! In the Social Media Guide, we give you educational posts for Facebook, tweets for Twitter, and e mail signatures. All you have to do is copy them and post!

Even easier, you can repost or retweet things we post.




Download Profile

Be Heard. Inspire Others. Be Yourself.





Download Facebook Banner #1

Download Facebook Banner for Ectodermal Dysplasias Awareness Month




Download and Personalize Your Own Facebook Banner

Download Facebook Banner - You Put In Your Photo

Download Twitter Banner

Download Twitter Banner




  • Use #EDAM2016 on all of your posts. This will help strengthen and unite our visual presence online.
  • 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.
  • Pinterest - Pin Items from our NFED Boards to yours. 


Enter Our Coloring Contest!

Print, Color, Enter in ContestRead Official Rules

Print the coloring page.

Have your child color as desired.

Have your child fill in words on what he or she wants the world to know about him or her. 

See rules for how to submit to the contest. 

Share on your social media and NFED's.


Order Your NFED ApparelWear Your NFED Apparel.   Visit our online store to order yours today!






Host or Paticipate in an Awareness or Fundraising Event

  • Email Lea at the NFED office or call her at 618-566-2020 to learn more. 
  • Rare Disease Day Awareness, February 29, Health Museum, Houston, Texas
  • State House Events, Rare Disease Day, February 29, sponsored by the National Organization for Rare Disorders


Help the NFED Send a Kid to CampHelp the NFED Send a Kid to Camp




Sell Cookies for a  Cure

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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