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.

Our goal is clear. 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 anomaly. If you are ready to take action, we have ways to advocate now.

The Issue

People born with these ectodermal dysplasias lack the ability to properly develop teeth. Their teeth may be missing, completely absent, have defective enamel or be shaped differently. If the teeth are not repaired and/or replaced, these individuals will have chewing, swallowing, digestive, speech and self-esteem issues.

In the United States, the states have existing statutes in place for health insurance and congenital anomalies. They mandate that benefits should cover all missing and malformed body parts to improve or restore normal bodily function. Dental benefits are excluded from these statutes except for when it’s for treatment to improve or restore normal bodily function due to a congenital anomaly. However, the reality is that for families affected by ectodermal dysplasias is that dental benefits are automatically denied, citing dental care for teeth as cosmetic. Our families face multiple denials and appeals.

On average, someone born with ectodermal dysplasia will spend $150,000 on necessary medical and dental care in their lifetime.

Families have sold their cars, remortgaged their homes, and foregone a college education to pay for their medically necessary dental care. Far more families simply go without care because they can’t afford it. We are rallying to change that.

Individuals who lose their teeth due to an accident receive dental benefits under the existing statutes. Yet, those who are missing teeth due to ectodermal dysplasia do not. We seek for families to receive equal treatment under existing state statutes.

The Solution – Ensuring Lasting Smiles Act

Sen. Tammy Baldwin

Senator Tammy Baldwin will soon introduce the Ensuring Lasting Smiles Act (ELSA). This legislation would close an insurance coverage loophole for people born with congenital anomalies who need complex oral restorative care. ELSA would require all group and individual health plans to cover medically necessary services as a result of congenital abnormalities. This law will provide coverage from the moment of birth and will consider congenital anomalies and birth abnormalities as an injury or sickness and cover the functional repair or restoration of any body part, including the teeth and the bone that holds them, when necessary to achieve normal bodily function.

Advocating for such a law is going to be a marathon, not a sprint. Our advocacy efforts are family-driven. We need you to take action!

Register as an Advocate

Your first step to advocate for ectodermal dysplasias is easy – and important. Let us know that you are ready to raise your voice for our community by filling out a short form. By doing so, we will email you with advocacy opportunities for you.


Ways You Can Advocate

We are advocating for members of Congress to co-sponsor ELSA with Senator Baldwin.  You can take action now on this issue and learn the ways you can advocate.


Join Us for Advocacy Day

We invite the ectodermal dysplasias community to join us on Wednesday, July 18th for our second Ectodermal Dysplasias Advocacy Day on Capitol Hill in Washington, D.C. Learn about how you can prepare for your legislator meetings. Check out the sample letters in our advocacy resources to see how families wrote their stories.

Join Us for Advocacy Day 

Allies In Our Corner

Sen. Baldwin raised awareness for ectodermal dysplasias on Capitol Hill by introducing Senate Resolution 226 (S.Res.226) in 2017 highlighting key information about ectodermal dysplasias. This resolution will educate our legislators. You can check here on whether or not your senator has co-sponsored S.Res.226.

During the first Ectodermal Dysplasias Advocacy Day on Capitol Hill on July 19, 2017, Rep. Jackie Speier of California also introduced House Resolution 464 (H.Res.464) highlighting key information about ectodermal dysplasias. You can check here to see if your representative has co-sponsored H.Res.464.