Advocate for Super Smiles

This February, we are asking you, our community, to participate in Ectodermal Dysplasias Awareness Month. Our goal is to create awareness, raise money and advocate for health benefits for dental care of ectodermal dysplasias. Our theme this year is “Advocate for Super Smiles.”

We have a variety of simple and powerful actions that you can take to help raise awareness and support our work to help everyone affected by ectodermal dysplasias. We make it easy for you by providing you with the tools and support you need to take action.

Building awareness of ectodermal dysplasias means families have an increased chance of being diagnosed and receiving better treatments. By focusing on lawmakers in the United States this year, we seek to educate them on the need for a federal law to assure insurance benefits for dental care of ectodermal dysplasias.

There are lots of simple things you can do to share your ectodermal dysplasias journey with others who may understand. Encourage your friends and family to join our efforts!

Share the Facts

Raising awareness is all of our jobs. Share these facts on your social media.

  • The ectodermal dysplasias are heritable conditions causing the hair, teeth, nails, skins and sweat glands to develop and function abnormally.
  • There are 180+ different types of ectodermal dysplasias with symptoms ranging from mild to severe.
  • An estimated 3.5 out of 10,000 babies born each year are affected by an ectodermal dysplasia.
  • Ectodermal dysplasias can cause teeth to be missing or absent, have poor enamel, or be shaped irregularly.
  • A typical individual affected by ectodermal dysplasia can expect to spend $150,000 out of pocket on dental care in a lifetime.
  • Health insurance pays to replace teeth missing due to an accident. They typically don’t pay to replace teeth that are missing due to birth. They call this care cosmetic.
  • Having proper dental treatment to replace teeth improves nutrition, digestion, speech, emotional well being, and stimulates tooth eruption when tooth buds are present.
  • The National Foundation for Ectodermal Dysplasias is advocating for a federal law to mandate that health insurance companies provide benefits for dental care of ectodermal dysplasias. We are advocating for super smiles!

Share Story and Photo of Your Super Smiler

Throughout February, we want to feature stories and pictures of our families and their super smiles. What have you had to sacrifice to pay for your dental care? Did you have to spend two years fighting your insurance company to pay for your dental implants or your child’s teeth? How much have you had to pay for dental care? We would love to tell your story. You can write your story or we can interview you. Send a photo of you or your child in their superhero outfit showing their super smile.  Share your super smile story.

Download Materials

Help us spread the word! Post this flyer about ectodermal dysplasia on your social media, at your church, your workplace or anyplace in your community. Take a photo of you by the poster and post to social media.

Right click on these  images and save to your local desktop to use on your social media.

Facebook Banner


Twitter Banner


Connect with us on Social Media

The easiest thing you can do is to share our posts, tweets and videos to your own social media. As you take action this month on social media, be sure and use the hashtag #teetharenotcosmetic and #supersmiles.






  • The best way to educate yourself about the ectodermal dysplasias is to attend our Family Conference 2018 in Portand, Oregon on July 6-7. While we have extensive information to learn on our website and caring communities to support you in our Facebook groups, nothing compares to meeting our experts and families in person! Make this be the year you give yourself the gift of attending. Register now.
  • Host your own event this month to fundraise for ectodermal dysplasias and raise awareness. We have great tool kits with step-by-step instructions that make your planning easy. Use our Bowling for Bites toolkit to create a night of fun for family and friends. Or you can get baking with Cookies for a Cure on Valentine’s Day. You might want to host a Don’t Sweat It Walk or Dining for Dollars event. Contact Lea at 618-566-6871 at our office with details of your event so we can post your event on our website.


Besides hosting an event, another way to raise money during Ectodermal Dysplasias Awareness Month is to host a Facebook fundraiser. It’s easy to do and can be set up in as little as five minutes! Just follow these three easy steps. 100% of your donations will come to the NFED since Facebook waves the credit card fees. If you need help, contact Lea at 618-566-6871.

If you need any help, just contact Jodi at 618-566-6875.

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