NFED Advocates in DC

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. Senators Tammy Baldwin (D-WI) and Joni Ernst (D-IA) introduced the Ensuring Lasting Smiles Act (ELSA) to the U.S. Senate on August 23, 2018. Representatives David Young (R-IA) and Collin Peterson (D-MN) introduced the companion bill to the House as well.

ELSA would remove a loophole in current law that allows insurance companies to deny or delay complex restorative care, including oral care, due to a congenital anomaly. It 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 More About ELSA

Family on Capitol Hill

Senator Baldwin Shaking Hands with a Child

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. Once you register, we’ll send you advocacy opportunities as they occur.

Sign Up to Be an Advocate

We also welcome other organizations interested in joining our advocacy efforts. See how to sign on as an official supporter of ELSA.

Group at McCaskill's office

Ways You Can 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.

Contact Your Members of Congress

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.

Ectodermal Dysplasias Advocacy Day

Our ectodermal dysplasias community went to Capitol Hill on Wednesday, July 18, 2018, for our second Ectodermal Dysplasias Advocacy Day in Washington, D.C. Learn about our success and how our families advocated for ELSA.

Advocating for the Ensuring Lasting Smiles Act is going to be a marathon, not a sprint. Congress members need to hear the personal stories and hardships of their constituents before they place their support in a bill. Our advocacy efforts are family-driven. We need you to take action for all those affected by ectodermal dysplasias.

Are you with us? Let’s turn this bill into law.