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.
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.
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.
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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