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 youth and adult ELSA advocates for our fourth NFED Advocacy Day on Capitol Hill on Wednesday, June 24, 2020. This event is for advocates who live in the United States. This year’s event is going to be virtual! Our goals are to:

  1. Educate legislators about ectodermal dysplasias and congenital anomalies and how private insurance is failing us. 
  2. Ask them to co-sponsor the Ensuring Lasting Smiles Act (ELSA), which requires coverage for necessary medical care.
  3. Request their help to move ELSA through Congress and make a difference for affected families this year.


How Advocacy Day Works

To participate, you will first need to register online. If you registered for the Family Conference before March 16, you are automatically registered for Virtual Advocacy Day.

Start Preparing

You will receive a series of emails with information and resources on how to prepare for Advocacy Day and write what you’d like to say. Want a head start? Check out our ELSA resources now, including FAQs and sample stories from NFED families that you can use for inspiration.

Get a Schedule

Our team will arrange phone meetings for you and other advocates from your state or district to talk with your senators and/or representative (or members of their staff). We’ll send you a link to download an advocacy app to access your Virtual Advocacy Day meeting schedule.

NFED Advocacy Day

Tell Your Story

Time to advocate! On Wednesday, June 24, you will have 15-minute virtual meetings with each person on your schedule. 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.

Register for Advocacy Day

Complete the form below to sign-up for Virtual Advocacy Day. We’ll be in touch soon to send you online resources and tips!