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 treatment and services resulting from congenital anomalies.

ELSA garnered incredible bi-partisan support in the U.S. House and the U.S. Senate in the last session of Congress but it didn’t pass. It will be re-introduced soon in 2021. Now is the time to build on our amazing progress and educate the new legislators.

Virtual Advocacy Day

April 28, 2021

You are invited to join ELSA advocates for our fourth NFED Advocacy Day Capitol Hill on Wednesday, April 28, 2021. This year’s event is going to be virtual.

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

Our team will arrange teleconference or video conference meetings for you and other advocates from your state or district to talk with your senators and/or representative on Wednesday, April 28. 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 February, 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.

Advocacy Training

We will host two advocacy training webinars to help you prepare for Virtual Advocacy Day. Once you register for Virtual Hill Day, you will receive links to each session closer to the training dates.

Advocacy 101 is a 30-minute live training session designed for individuals who are first-time advocates. It will be held on Wednesday, March 31 at 6 p.m. Central / 7 p.m. Eastern.

Virtual Day on the Hill Training is a 60-minute live training session designed for ALL registered advocates. You will learn what to expect on Hill Day, the talking points and how to use the online platform. It is scheduled for Monday, April 19, 2021 at 6 p.m. Central / 7 p.m. Eastern.

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

Registration for Advocacy Day is closed. If you have any questions, please contact us.

The NFED works with an advocacy firm to schedule our legislative visits. Keep in mind that the NFED has to pay per legislative meeting. If you are unable to attend the meetings we schedule for you, the NFED still has to pay. We appreciate your commitment to show up and advocate!

The advocacy firm will text you with information the week of Virtual Hill Day so please provide your mobile number below.