Health insurance carriers generally pay benefits for medically necessary care and treatment related to the hair, skin and nails. Most, however, automatically deny benefits for oral health care, that is, teeth.

Our Insurance Assistance Program can help you better understand your benefits and the coverage you’re entitled to according to law. While our resources focus on teeth and dental claims, this information can be used for other treatments and services.

WHAT YOU SHOULD KNOW


Ectodermal Dysplasia is a rare genetic birth disorder, also known as a congenital anomaly. Most insurance policies have a congenital anomaly clause that explains coverage for related treatment. 

Self-insured/Self-funded Plans and Congenital Anomalies 

Large employers typically don’t offer health insurance to their employees through a state-licensed insurance company. Instead, they are self insured/self-funded. These employer-sponsored health benefit plans are not subject to state insurance laws. Rather, they come under a Federal law known as the Employee Retirement Income Security Act (ERISA).

State Insurance Laws and Congenital Anomalies

State insurance departments regulate health insurance. Health insurance laws vary by state. Many states have laws in place protecting people with a congenital anomaly from the moment of birth. You can learn about the laws in your state from this list we compiled. Most Statutes can also be found by searching online. 

DOWNLOAD LIST OF STATUTES ON CONGENITAL ANOMALIES BY STATE

State statutes will require that congenital anomaly and birth abnormalities be covered as an injury or sickness under the policy and cover functional repair or restoration of any body part when necessary to achieve normal body functioning. This includes teeth. (Many state statutes exclude cosmetic procedures only to improve appearance.)

Navigating Health Insurance Claims

New to managing health insurance claims for dental care? We collaborated with Susan Barbey, a health insurance specialist, to outline what you need to learn about your insurance coverage and applicable state laws to get your treatment(s) and devices covered.

LEARN THE RULES OF MANAGING CLAIMS

HOW WE CAN HELP


For Families

To assist the NFED community as they work through the claims process, we offer the following information and support.

For Dental Providers

If you are a dental provider with a patient affected by ectodermal dysplasias, use our Dental Provider Insurance Toolkit. It was prepared by a knowledgeable and experienced dental office administrator and includes helpful tips like common diagnostic codes. Contact us with your medical billing questions and to access additional training resources.

GET INVOLVED


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 adviser. You would talk to individuals who are in the appeal process to provide tips and share your experience.