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

Join Us for Advocacy Day on Capitol Hill

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?

Join us on July 19, 2017 in Washington D.C. when you will have the opportunity to meet with your legislators on Capitol Hill. 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. – 5:30 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.

To achieve this goal, we need every NFED member who can make it to Washington to attend. Make your needs known and your voices heard. We look forward to seeing you there.

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 need a minimum 50 people to attend and participate. We need you there. We encourage you to bring your children so your senators and representatives can put a face to ectodermal dysplasia.

Training

Training will take place from 3:30 p.m. – 5:30 p.m., Tuesday, July 18 at the Westin Tysons Corner, Falls Church, Va. This is the same location as the Family Conference.

Register to Participate

If you are attending the Family Conference, you can register for Advocacy Day using the Family Conference Registration Form.

If you are NOT attending Family Conference, you can register for Advocacy Day using our Advocacy Form.

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.