Understanding your medical insurance and what it does and does not cover can be confusing and frustrating. While medical insurance generally covers problems related to the hair, skin, nails and other aspects of the disorder, some don’t cover the dental care needed because of dental exclusions.

However, we encourage you to submit your dental care expenses for ectodermal dysplasia to your medical insurance. You will need to make a case with the insurer to encourage them to cover the dental-related costs of this medical condition. Properly educating the insurance company may enable approval of dental-related costs under the insurance policy’s birth defect (congenital anomaly) language or medical necessity language.

State Insurance Laws

Insurance laws in the United States vary by state. What appeals process works in another state may not work in your state. Some states (Georgia, New York, Virginia and Wisconsin) have laws or regulations mandating medical coverage for ectodermal dysplasias. Another way to get better coverage could be a self-insured policy. Companies that offer self-insured policies are not required to follow state laws and regulations.

Appeal Process

Unfortunately, very often it is not a question of whether your claim will be denied, but when it will be denied. It is important you make the company understand that you won’t give up.

Be patient, because an approval may take months. Try not to get tired and don’t accept the denial. Insurers know that customers are either likely to accept the initial denial or get tired of the fight. If success seems out of reach, consider contacting an attorney for help. Our experience is that families have been enormously successfully when legal counsel has assisted them. It doesn’t take long for an insurer to figure out that legal bills will quickly add up to more than the cost of a set of dentures.

For inspiration, read insurance success stories submitted by NFED families.

How We Can Help

Download our Insurance Toolkit

This toolkit will walk you through in detail the steps you need to take to make a successful claim. It also includes sample letters, diagnosis codes, a list of insurance companies that have granted dental benefits under medical.

Download the Toolkit

Contact our office

Our staff and advisors can talk to you about the process, answer questions, provide tips for success and more importantly, listen with a compassionate ear. Advisors are individuals in our NFED community who have been successful in the insurance battle.

Contact Us

Request copies of letters from insurance companies

You can request letters approving benefits for specific individuals. We maintain a file of letters submitted by families who have been successful. Learn how to use these letters in the Step By Step Guide.

How You Can Help

If you have been successful in your battle, your knowledge and experience could help others. Here are ways you can share your insight.

  • Send a copy of your approval letter to the NFED office. We’ll add it to our file of letters to be a resource for others.
  • Write and submit your insurance success story so we can share it with our community.
  • Volunteer as an insurance advisor. You would talk to individuals who are in the appeal process to provide tips and share your experience.