Date: July 19, 2017
Time: 9:00 am  to  5:00 pm

Registration for Advocacy Day is Closed

We are excited to have 160+ signed up to participate. Check out our Facebook event page for updates.

Are you tired of fighting your health insurance company or your employer-sponsored self-insured plan for necessary medical care and treatment affecting the teeth due to ectodermal dysplasia, a congenital anomaly? Aren’t we all tired of this? Our new  Family-Driven Advocacy initiative is a step toward a solution.

Our Goal is Clear

We want a federal law mandating that health insurance & employer-sponsored self-insured health benefit plans cover congenital anomalies and birth abnormalities from the moment of birth as an injury or sickness, covering the functional repair or restoration of any body part, including the teeth and bone that holds the teeth, when necessary to achieve normal bodily function.

We will educate members of the U.S. Senate and U.S. House of Representatives about the following:

  1. What is ectodermal dysplasia?
  2. We will explain our issues with missing teeth, and the bone that holds them in place.
  3. Explain that although many states (the regulatory body for health insurance) already have health insurance laws that: a) provide medical benefits to people who lose their “sound natural teeth” due to accidental injury (i.e. a car wreck) yet insurance companies auto-deny those same benefits for people whose accident happened in-utero and b) have laws that provide medical benefits to people born with a congenital anomaly with defective body parts—yet auto-deny necessary medical care and treatment regarding the teeth—a body part.
  4. Share your experience and frustration working with your insurance company or your employer-sponsored self-insured health benefit plan (that often include this language), the time it takes per claim per year to get paid (if you get paid), year over year for a lifetime.


You can download and print this timeline for Advocacy Day and training day. Advocacy Day is being held the two days prior to our Family Conference, allowing families to participate in both events.  We will schedule your appointments with your legislators, provide you with materials and guide you on what to say when meeting with them. We encourage you to bring your children so your senators and representatives can put a face to ectodermal dysplasias.


Training will take place from 3:30 p.m. – 6:30 p.m., Tuesday, July 18 at the Westin Tysons Corner, Falls Church, Va. This is the same location as the Family Conference.

How to Prepare to Advocate

Read the Advocacy Toolkit

This toolkit explains everything you need to know to participate in Advocacy Day on Capitol Hill.

Read Advocacy Tool Kit

Watch Webinar on How to Prepare

NFED Advocacy Committee Chairs, Becky Abbott and Beth Pond, presented a free webinar on Tuesday, May 16th to discuss the importance of advocacy, how you can prepare for Advocacy day and more.

 Watch webinar 

You can also read this blog post on what to expect.

Contact Your Legislator by Email or Mail by July 19, 2017

Now that we have Senator Tammy Baldwin in our corner, we need you to contact your legislators, educate them and ask for their support. This is an important step in our process to garner support for federal legislation. Everyone needs to participate! Share with your family and ask them to send this letter to their legislators as well. There are strength in numbers and the more letters that are received the more our voices will be heard!

Use This Letter If You Are Attending Advocacy Day 

Write Your Story

Use our Advocacy Tool Kit which will help you write your story. If you are attending Advocacy Day, bring copies of your story with you to give to legislators. If you are not attending Advocacy Day, you can still share your story. Email your story to Kelley at the NFED by Monday, July 10, 2017. An NFED family will hand deliver it to your legislators on Capitol Hill. Please include a picture that can be shared with your legislators as well.

Security Information for Capitol Hill

You will want to review the list of prohibited items at Capitol Hill before you arrive.

Advocate on Social Media With Us

Follow our Facebook Event page for updates. On Advocacy Day, we will be tweeting and posting to Facebook throughout the day. If you are attending, use this guide to participate in social media with us! Use these hashtags: #teetharenotcosmetic #mysmile

Use This Social Media Handout 

Contact Kelley at our office if you have any questions.