National Foundation for Ectodermal Dysplasias

Our mission is to empower and connect people touched by
ectodermal dysplasias through education, support, and research.

CALL US AT (618) 566-2020

We're here to help

Insurance Assistance

With a little bit of determination and hard work, NFED families are getting their claims paid. The NFED can help you with this process by offering the following:

Letters of Support and Medical Information

The NFED can provide you with letters from the Scientific Advisory Council that indicate oral treatment needs related to the ectodermal dysplasias are a direct result of ectodermal dysplasia and are therefore medically necessary oral health care. The NFED can provide you with a copy of A Dental Guide to the Ectodermal Dysplasias and Parameters of Oral Health Care For Individuals Affected by Ectodermal Dysplasia Syndromes. These publications explain the ectodermal dysplasias and offer treatment suggestions.

Documentation of Paid Insurance Claims

The NFED keeps a record and copies of dental benefits that have been paid under medical insurance policies. This is critical to successes for other families and has been helpful in identifying companies who may have approved benefits for one policyholder and then denied them for another.

Information on Fighting Your Insurance Company and State Insurance Laws

The NFED has a guide on steps you should take when appealing an insurance decision. This guide gives tips on how to deal with your insurance company. The NFED staff has assisted families in successfully changing a state insurance regulation to cover congenital anomalies, therefore mandating that dental procedures related to the ectodermal dysplasias be covered under medical insurance policies.

Download Insurance Tool Kit:  A Step-by-Step Guide to Get Medical Benefits for Dental Care for Ectodermal Dysplasias

Moral Support and Success Stories From Others

The NFED staff has talked with countless families that have received coverage and families that have been denied dental coverage under their medical policies. The staff can give you advice and suggestions for dealing with your appeals and can be a good listening board.

The NFED can put you in contact with other families who have successfully fought their insurance company to receive benefits.


We would love to hear from you if you successful fought  your insurance company.  Please email Kelley Atchison with your story.

If you are currently fighting your insurance company and need assistance (or don't even know where to begin), contact Kelley Atchison at 618-566-2020 for assistance.

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The National Foundation for Ectodermal Dysplasias (NFED) is a qualified 501(c)(3) nonprofit organization.
The EIN is 37-1112496. The NFED is registered in all states where applicable.
6 Executive Dr., Ste. 2, Fairview Heights, IL 62208-1360