Join Us on Capitol Hill
Date: July 19, 2017
Time: 9:00 am  to  5:00 pm

Registration for Advocacy Day is Now Closed

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 Advocacy initiative is a step toward a solution.

We are excited to have 160+ signed up to participate. Information on what to expect and how to best use your time when meeting with your legislators will be provided on Tuesday, July 18, from 3:30 p.m. – 6 p.m. at the Westin Tysons Corner, Falls Church, Va. This is the same location as the Family Conference.

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 body 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.

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 dysplasia.


Training will take place from 3:30 p.m. – 6 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

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.

2nd Webinar on How to Prepare

Beth and Becky will host a second webinar on Tuesday, June 27 at 7:30 p.m. Central to give attendees more information on what will take place on Advocacy Day, security on Capitol Hill and the next steps you need to take to prepare.

 Register for Webinar 

NFED Advocacy Tool Kit

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

Download NFED Advocacy Tool Kit 

Contact Kelley at our office if you have any questions.

Security Information for Capitol Hill

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