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

June is Ectodermal Dysplasias Awareness Month


What You Can Do To Celebrate

  • Share your ectodermal dysplasia story! Email it Jodi and she will post on the NFED website.
  • Tell your friends and followers you have decided to Build Awareness, Create Hope, Find a Cure by changing your profile picture, or changing your Facebook Timeline Cover, and then tell them why.
  • Share NFED literature within your community. Ask schools, place of worship, community centers, supermarkets, local hospitals, clinics, doctors’ offices and pharmacies to display and distribute ectodermal dysplasias educational materials. Call 618-566-2020 or email Kelley to request brochures and/or posters.
  • Update your Facebook status with these sample messages:

June is Ectodermal Dysplasias Awareness Month. Join the National Foundation for Ectodermal Dysplasias to help raise awareness of these rare genetic disorders and to  show support for the estimated thousands of people around the globe who are affected. Learn more at

Ectdodermal dysplasias affect an estimated 1 in 10,000 babies. Build awareness and create hope by helping us spread the word.

Download Fact Sheet.

  • Post a Web banner on your Web site or blog linking to or to this Ectodermal Dysplasias Awareness Month webpage.
  • Host or participate in a Don’t Sweat It Walk –  Read more
  • Educating your local community is very important as it can make day-to-day life much easier for individuals who are affected.  One of the easiest ways to spread the word in your community is to do an interview for your local newspaper and share your personal story.
  • Download Awareness Flyers. Click on the flyer of your choice below and the save to your local computer or print. 

  Download Awareness Flyer  Download Awareness Flyer  Download Awareness Flyer

  • Commit to doing at least one thing to raise awareness this June!


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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.