The biggest complaint we hear from families in the United States who are affected by ectodermal dysplasias is that their health insurance company or their employer-sponsored self-insured health plan has denied benefits for necessary medical care and treatment regarding teeth. Our mission is to put an end to this by advocating to Congress.

Ensuring Lasting Smiles Act

We want the federal government to pass a law guaranteeing the payment of health insurance benefits for necessary medical care and treatment due to congenital anomalies. The Ensuring Lasting Smiles Act (ELSA) would mean families affected by ectodermal dysplasias and other congenital anomalies could receive the care and procedures they need—and deserve—to gain normal body functions.

Learn How ELSA Can Help
A group of child NFED advocates smiling

Register as an Advocate

Your first step to advocate for ectodermal dysplasias is easy, but very important. Let us know that you’re ready to raise your voice for our community by filling out a short form.

A group of NFED members sitting around a table discussing ways to advocate

Ways to Advocate

We’re currently advocating for members of Congress to co-sponsor ELSA. Use our advocacy tool to take action now and reach out to your members of Congress for support.

A group of NFED members holding a sign to advocate for smiles

Advocacy Resources

Check out materials and resources created to help you prepare for meeting with your legislators, including sample letters, talking points and leave-behind materials.

Senator Baldwin meeting a young NFED member

Day on the Hill

Our NFED community annually gathers in Capitol Hill to advocate for ELSA. In 2019, we called on Congress on July 17th. Learn about our success and how our families led the way.

The Power of ELSA

4%

Children in the U.S. born with life-altering congenital anomalies or birth defects

3

Age that children with ectodermal dysplasias should start wearing dentures

30+

Patient advocacy and provider organizations already signed on to help

Read Aidan's Story

Latest Advocacy Updates