An estimated 3.5 of 10,000 people are affected by ectodermal dysplasias. Very few people have heard about these conditions or know about the challenges people with it face. You can help us change that number. Join the National Foundation for Ectodermal Dysplasias (NFED) in our worldwide effort this February to raise awareness and funds for these rare, genetic disorders.

Our theme is “Power to Smile: Teeth Are Not Just Cosmetic.” Missing teeth are one of the most common symptoms of ectodermal dysplasias. It causes a lifetime of complex dental care that is often not covered by medical insurance. We are highlighting the impact that has on our families’ smiles, health and lives. Our vision is that every person affected by ectodermal dysplasia will have the Power to Smile, talk and eat with confidence!

To fulfill our vision, we will work in every U.S. state to get legislation passed that mandates medical benefits for dental care for ectodermal dysplasias. We launch this initiative on Advocacy Day on Capitol Hill on July 19th and hope you will join us. But for now…

Rally your family and friends to help us celebrate Ectodermal Dysplasias Awareness Month throughout February!

Learn the Facts

  • Ectodermal dysplasias affect the teeth, hair, nails, skin and sweat glands.
  • There are no cures for the 180+ types of ectodermal dysplasia.
  • Most or all of the teeth may be missing, shaped differently, widely-spaced or have faulty enamel.
  • The NFED recommends that individuals with missing teeth get dentures before they start school.
  • Having a full set of teeth improves nutrition, speech, digestion and confidence.
  • Someone affected by ectodermal dysplasia can expect to spend an estimated $150,000 in dental care in their life time.
  • Insurance companies typically consider this care cosmetic and deny benefits so people often go without dental care.

Take Action

Ectodermal Dysplasias Awareness Month Tool Kit

It’s easy for you to celebrate Ectodermal Dysplasias Awareness Month with us. You will find everything you need here to get you started. You can access flyers to distribute, images and posts to use on Facebook and Twitter and an activity to use in your child’s classroom.

Follow the NFED on Facebook, Twitter, Pinterest and YouTube throughout February for materials to share in Ectodermal Dysplasias Awareness Month. Here are some tools to get you started.

Social Media Tools

Right click on the image and click “save image as” to save the image on your computer.

Facebook Cover

Facebook Profile Picture
 

 

 

Twitter Cover
 
Twitter Profile Picture
 

 

 

Sample Posts

Facebook
  • February is Ectodermal Dysplasias Awareness Month. You can learn more about these genetic conditions at www.nfed.org and take action to educate your community.
  • Did you know ectodermal dysplasias affect the teeth, hair, nails, sweat glands and skin? Learn more about these symptoms this Ectodermal Dysplasias Awareness Month by visiting www.nfed.org.
  • Did you know someone affected by ectodermal dysplasia can expect to spend $150,000 in dental care during their lifetime? Learn more about the dental challenges of ectodermal dysplasias at www.nfed.org this Ectodermal Dysplasias Awareness Month. You have the power to raise awareness and create change.
Twitter
  • February is #EctodermalDysplasias Awareness Month. Learn more and take action at nfed.org #PowerToSmile
  • Did you know people with #ectodermaldysplasias may be missing most/all of their teeth? Learn more at nfed.org. #PowerToSmile
  • People with #ectodermaldysplasias spend $150k/lifetime on dental care. Learn about their challenges nfed.org. #PowerToSmile

Fact Sheets

Use these flyers to educate your family, friends, co-workers about ectodermal dysplasias and the dental challenges they cause.

Download Teeth Are Not Just Cosmetic Flyer Download Ectodermal Dysplasias Fact Sheet

My Smile Photo Campaign

You can show the impact of ectodermal dysplasia by posting a photo of you or your child holding the “My Smile” sign on your Facebook page. Write on the sign something about your smile. Be sure to include @National Foundation for Ectodermal Dysplasias in the to tag us in the comment of the post. Write on the sign something about your smile.

Examples:

“I love my smile.”

“My smile cost me $35,000.”

“My smile makes me feel ______”

Download My Smile Sign 

Tell Your Story

Tell us about your experience with ectodermal dysplasia. Send us your story along with photos. We will use these stories on our website, social media and other communications. Here are some story ideas:

  • How do you feel about your smile?
  • Have you had a hard time getting your insurance company to pay for your care?
  • What sacrifices have you and your family made for your dental care?

Classroom Activity

Share this coloring page and activity with the parents and teachers in your life.  It provides a lesson plan for educators to use to talk about how all of us are unique in some way and how we are the same.  It includes guiding questions for conversation and reflections.

Download the “I Am Me” Coloring Activity

Contact Jodi at the NFED with any questions.

Sign Up to Participate in Advocacy Day on Capital Hill

Fundraising for Ectodermal Dysplasias

There are lots of ways to fundraise for the NFED during February whether you hold an event or sell Cookies for a Cure.  Hosting a Facebook fundraiser is a super easy way to get your family and friends involved. We encourage you to start your Facebook fundraiser on February 1st and hold throughout the month. Start at the NFED Facebook page and click “Fundraisers” on the menu on the left. Follow the prompts and you are on your way. If you have any questions, contact Brittany at our office.

 

2 comments on “Ectodermal Dysplasias Awareness Month 2017”

  1. 1
    Sylwia on October 18, 2017

    Hi I have a son called Szymon with ectodermal dysplasia. We are living in Scotland but originally come from Poland. Szymon has not mamy teeth and I am trying to get him dentures to help him live properly but it is not Easy here. Will fight for his best.

    1. 2
      Jodi Edgar Reinhardt on October 18, 2017

      Good luck! We hope that you are successful. We advocate strongly for the dentures! – Jodi, NFED

Leave a Reply

Your email address will not be published. Required fields are marked *