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

Does your insurance company provide benefits for the dental care for ectodermal dysplasias? Are you tired of fighting and appealing to the insurance company to get those benefits?

Join us and families affected by ectodermal dysplasias from around the United States when we will raise our voices high to our lawmakers in Washington D.C. on Capitol Hill. We seek to educate the legislators about ectodermal dysplasias and the need for legislation in each state to mandate medical benefits for dental care.

Advocacy Day is being held the two days prior to our Family Conference, enabling families to participate in both events.  We will schedule the appointments, provide materials and train you on what to say when meeting with Congress representatives from your state. Training will take place on Tuesday, July 18, 2017.

We are looking for at least 50 people to participate. We encourage you to bring your children with you so that the  legislators can meet those who are affected.

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.

Advocating In All 50 States

Advocacy for this change is a massive undertaking that will take enormous resources and many years. Families affected by ectodermal dysplasias are leading this advocacy campaign. This day on the Hill is our first step in raising awareness about the issues.

Families created an NFED Advocacy Tool Kit which provides sample letters for you to use to write your own letters to share with state legislators on Capitol Hill Day.

NFED Advocacy Tool Kit 

Contact Kelley at our office if you have any questions.