The ectodermal dysplasias are a group of 100+ rare, genetic conditions involving the hair, teeth, nails, glands and skin.  Unfortunately, there are no cures for them.  We are working to learn more abut the genes the cause them and how to better treat the people they affect. You can help by raising awareness.

Our NFED family needs you to help us tell the world about these rare conditions. Sharing your story and experience with ectodermal dysplasias is one of the most powerful ways you can educate others. Each year, more people know about the ectodermal dysplasias and the NFED. But we have a lot more work to do before it becomes a household name. Together, we are stronger when it comes to increasing awareness and support for our cause.

Ectodermal Dysplasias Awareness Month

Join our ectodermal dysplasias community each February when we unite for Ectodermal Dysplasias Awareness Month and International Ectodermal Dysplasias Awareness Day.

Together, we can make a difference in raising awareness of these genetic disorders and increasing understanding.

Educate Your Community

We can help you with activities in your community whether it’s by changing your social media photo, speaking at your church or hosting an awareness event. Contact Jodi at the NFED at 618-566-6875.

Share Ectodermal Dysplasias Facts on Social Media

Help share key facts about the ectodermal dysplasias on your social networks. Education is key to understanding the conditions.

Share Key Facts

  • #EctodermalDysplasias are a group of 50+ rare genetic disorders causing the hair, teeth, nails, glands and skin to develop and function abnormally. #EctodermalDysplasiasAwareness
  • #EctodermalDysplasias affects approximately 3.5 out of 10,000 births. #EctodermalDysplasiasAwareness
  • The NFED is the worldwide expert on #EctodermalDysplasia. #EctodermalDysplasiasAwareness

Advocate With Us

Girl affected by ectodermal dysplasia holds an awareness poster.You have the power to help shape public policy regarding medical benefits for the dental care of ectodermal dysplasias. Learn more how you can advocate and help us get a law that mandates health insurance benefits for the dental care of ectodermal dysplasias.

Stay Connected

Follow us on social media to stay up-to-date on the latest news and to connect with other people with ectodermal dysplasias. We are on Facebook, Instagram, Twitter, Pinterest, and YouTube.