Join our advocates in fighting for the Ensuring Lasting Smiles Act (ELSA) to get passed in this session of the U.S. Congress. This federal legislation would require private insurance to cover medically necessary services resulting from congenital anomalies.

Since ELSA was introduced on February 26, 2019, it has received bi-partisan support in the U.S. House and the U.S. Senate. Thanks to your advocacy, the bill has reached a supermajority in the House.

Now is the time to build on our amazing progress.

Virtual Advocacy Day – June 24

You are invited to join ELSA advocates for our fourth NFED Advocacy Day on Capitol Hill on Wednesday, June 24, 2020. This year’s event is going to be virtual! (Originally, this in-person event was scheduled in conjunction with our 2020 Family Conference but was canceled due to the coronavirus (COVID-19) pandemic.)

Our goal is to educate legislators, ask them to co-sponsor the Ensuring Lasting Smiles Act (ELSA) and ask them to help us move ELSA through Congress.

How Virtual Advocacy Day Will Work

To participate, you will first need to register by completing the form below before Friday, May 22. If you registered for the Family Conference before March 16, you are automatically registered for Virtual Advocacy Day.

Our team will arrange teleconference meetings for you and other advocates from your state or district to talk with your senators and/or representative (or members of their staff) via the telephone on Wednesday, June 24. Each meeting typically lasts 15 minutes but could go longer or shorter. You will get the opportunity to briefly share your story of being affected by ectodermal dysplasia or a congenital anomaly, your treatment needs and insurance struggles.

In May, we will send you a series of emails with information and resources on how to prepare for Advocacy Day and write your story. You will also get a link  to download an advocacy app to access your meeting schedule when it’s available.

Start Planning

If you want to get started, we do have advocacy resources about ELSA you can check out now to plan ahead. There are several sample letters from family advocates that you can use as a template for your own family story.

Register for Virtual Advocacy Day.

Complete the form below by Friday, May 22 to sign-up for Virtual Advocacy Day.