Advocating for Federal Legislation

The biggest complaint we hear from families is that their health insurance company or their employer sponsored self-insured health plan has denied benefits for necessary medical care and treatment regarding teeth. Our mission is to put an end to this.

Our goal is clear. We want the federal government to pass a law guaranteeing the payment of health insurance benefits for necessary medical care and treatment due to congenital anomaly.

This law will provide coverage from the moment of birth and will consider congenital anomalies and birth abnormalities as an injury or sickness and cover the functional repair or restoration of any body part, including the teeth and the bone that holds them, when necessary to achieve normal bodily function.

An Ally In Our Corner

We are excited that Senator Tammy Baldwin from Wisconsin heard us and cares enough to take action. She understands our challenges, struggling with insurance coverage for medically necessary dental treatment.

Senator Baldwin will help us raise awareness for ectodermal dysplasias on Capitol Hill and plans to introduce a Senate Resolution highlighting key information about ectodermal dysplasias. This resolution will educate our legislators.

Ectodermal Dysplasias Advocacy Day on Capitol Hill

We will kick off this initiative with Advocacy Day on Capitol Hill on Wednesday, July 19, 2017.

Learn more about Advocacy Day on Capitol Hill

Step 1: Share 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.

 Read Advocacy Tool Kit 

Step 2: 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 Use This Letter If You Are Not Attending Advocacy Day 

How to Find the Contact Information for Your Legislators

Contact your legislator by mail or email before Advocacy Day which is July 19, 2017. If you don’t know who your legislators are (you have two senators and one representative), do the following:

U.S. Senate

  • Go to
  • Top left, click on Senators.
  • Top left, choose your state and click. You will see your two U.S. senators for your state.

U.S. House of Representatives

  • Go to
  • Top right says FIND YOUR REPRESENTATIVE. Enter your zip code and click GO.
  • The name of your U.S. Representative for your state district will appear at top left side of page.

Step 3: Contact Senator Tammy Baldwin

Now that you and your family have sent letters to your legislators, we need you to contact Senator Tammy Baldwin of Wisconsin. Thank Senator Baldwin for listening to our needs, helping us raise awareness, and ask her to support our initiative to introduce federal legislation mandating medical insurance coverage for medically necessary dental treatment associated with ectodermal dysplasias.

Please write your letter, then either email or mail it to her office. Please include your full name & physical mailing address in the email, so Senator Baldwin’s office will know how to reply and to ensure you receive a response!  If you are attending Ectodermal Dysplasias Advocacy Day on Capitol Hill, please print and bring two copies of your personal story letter as a leave behind, one for Senator Baldwin, and one for the NFED.

Use This Letter to Write Senator Baldwin

If you have any questions, email Kelley at the NFED or call her at 618-566-6873.