We’re going back!

To Capitol Hill for our 2nd Ectodermal Dysplasias Advocacy Day, that is. We hope that you will join us July 17-18 in Washington D.C.

We took 175 people with us to Capitol Hill in 2017 for the first Ectodermal Dysplasias Advocacy Day and it was a huge success!

If you are a family living in the United States who is affected by ectodermal dysplasia, you more than likely have been frustrated by insurance companies which deny your claims for dental care. You may have had to appeal time and again and fight for coverage. Maybe you followed the steps in Health Insurance Claims and Teeth 101 and your appeals were even successful. But, you shouldn’t have to fight for benefits that are already due to you.

Did you know that every state already has statutes in place providing coverage for people with congenital anomaly (birth disorders)? Yet, they continue to automatically deny coverage for teeth. These statutes don’t just apply to dental care. They also apply to medical care of ectodermal dysplasias.

We promised you that we are on a mission to get a federal law that will mandate that insurance companies pay for health benefits of ectodermal dysplasias. What we are asking for is a level playing field. If insurance companies can pay to replace teeth missing due to accident, they should pay to replace teeth missing due to a birth defect.

Senator Tammy Baldwin from Wisconsin met with the Abbott family at our first Ectodermal Dysplasias Advocacy Day.

Update on the Senate Bill

We know that you are all excited about the upcoming introduction of the Senate Bill that Senator Tammy Baldwin of Wisconsin plans to introduce. While we are patiently waiting, we wanted to share some specifics on this legislation with you.

The bill would ensure coverage for congenital anomalies. This legislation will not only help families with ectodermal dysplasias with coverage for dental treatments, it will help families with other conditions who struggle with insurance coverage related to congenital anomalies.

We are hopeful that when we visit Capitol Hill in July, our message will be to ask Congress to support this Bill and vote into law.


We are going to make this as easy as possible for you to participate in Ectodermal Dysplasias Advocacy Day. We will set up all of your appointments with the senators and representatives from your home state. You will partner with other NFED families from your state to make your Hill visits.

Next, our experts will train you on what to say and will provide you with all of the information you need to participate. Training will take place in the afternoon on Tuesday, July 17th at a hotel in Washington, D.C. We are still finalizing the details for the time and location.

How to Register

Take action now and sign up to participate in Ectodermal Dysplasias Advocacy Day on Capitol Hill. It’s free to participate. You must register to attend. We will provide dinner Tuesday night and breakfast on Wednesday. You are responsible for costs related to travel and lodging.

Scholarships Available

We know that traveling to D.C. can be expensive. To help you afford to come, we are offering a limited number of travel scholarships for approved families. Scholarship recipients must attend the training on July 17 and the full Advocacy Day on July 18

Please consider bringing your children who are affected by ectodermal dysplasia with you to Capitol Hill. They made a big impact on the legislators in 2017 at our first Hill day.

Insurance coverage for ectodermal dysplasias is the problem. You can be a part of the solution. We look forward to seeing you on Capitol Hill where we will tell Congress about what our families need.

Register now to participate in Ectodermal Dysplasias Advocacy Day on Capitol Hill


If you didn’t attend last year, watch this video highlight.

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