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.
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
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.
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.
Check out materials and resources created to help you prepare for meeting with your legislators, including sample letters, talking points and leave-behind materials.
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
Children in the U.S. born with life-altering congenital anomalies or birth defects
Age that children with ectodermal dysplasias should start wearing dentures
Patient advocacy and provider organizations already signed on to help