It’s the story we’ve heard over and over for decades.

You live in the United States. You and/or your child need medically necessary dental care due to ectodermal dysplasia. Yet, your private health insurance – for which you pay your premiums and deductibles – continues to deny your claims and appeals.

Sound familiar?

The National Foundation for Ectodermal Dysplasias (NFED) has made incredible advancements in 40 years for ectodermal dysplasias. We have expanded what we know about the conditions, helped develop better treatment options and ignited major research advancements. But, this one challenge has remained constant: insurance.  

That’s been our inspiration for leading the effort for the Ensuring Lasting Smiles Act to become law. But until that day happens, we know you and your family still need dental care. You deserve to have the benefits you are paying for.

You can be successful in getting your claims covered. But, as we both know, it’s going to take work on your end. 

Until ELSA is passed, here’s how the NFED can help through our Insurance Assistance Program.

We recently revamped the insurance section of our website so you can navigate it more easily. It’s a comprehensive guide and loaded with the resources you need to be successful.

Insurance Assistance Program

Start here to get an overview of how the program works and what you need to learn about the insurance process.  One of your first steps is to find what laws your state has about insurance covering congenital anomalies. You can also download a toolkit to share with your dental office.

It will walk them through best practices for how to file your claims with your health – not your dental – insurance.  To help motivate you to stay the insurance course, you can also read stories of other families’ who have found success.

Next, head to the Family Roadmap and Resources for step-by-step directions. It starts with contacting your plan administrator and learning how to file claims. You can download our Insurance Toolkit and watch a webinar.

Stay the Course

After you have done this homework, you might still have questions. That’s where the NFED comes in. Call our knowledgeable staff for answers and support. We will be your biggest cheerleaders!

Here’s the unfortunate reality:  this process takes time, work, patience and determination. Know from the beginning that insurance denials and appeals will likely be a part of the process. You might get tired, frustrated and angry – and have good reason for all of it.

But, we encourage you to persevere. Once your insurance provides benefits for your care, it will set precedence for your future claims. It should make your case easier moving forward.

Jamie shared great insurance tips from her dental journey and getting her care covered.

Your efforts can pay off! Jamie Sommerville is a great example. Affected by x-linked hypohidrotic ectodermal dysplasia, she worked with her dentist office and was successful in getting her claims approved. Jamie shared her insurance journey and gives many practical tips.

For those who are in the process of obtaining medical treatment, or have received more ‘denial’ letters than you can count, know that I understand your hurdles, the tears, frustration, and the overall hard work it takes. It is all worth fighting for, and I am cheering you on from the other side.

– Jamie Sommerville
Read Jamie’s Story

We hope that you find our Insurance Assistance Program to be simple to follow but impactful to your journey.

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