NFED Advocacy Day

We recently found a letter from one of our beloved Scientific Advisory Council members, Dr. Frank Farrington, who recently passed away. He wrote a letter to the National Foundation for Ectodermal Dysplasias (NFED) in 1983 stating the need for legislation to help our families with insurance.

You read that right. Our families have been fighting for coverage for decades!

We must put an end to these heartbreaking insurance struggles.

ELSA to the Rescue

To do this, the NFED has made it a priority to move the Ensuring Lasting Smiles Act (ELSA) S.560/H.R.1379 forward through Congress to ensure that all individuals with congenital anomalies receive the medically-necessary treatments they need and deserve.

To garner additional support this year, we had planned our annual NFED Advocacy Day on the Hill. However, due to the COVID-19 pandemic, we were forced to cancel that event and move it to a Virtual Advocacy Day.

Our virtual event is free and is scheduled for Wednesday June 24th, 2020. Our goal is to get 500 advocates to participate in the congressional meetings.

Here’s why this year’s Virtual Advocacy Day is the most critical one to date.

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What Happens if ELSA is Not Passed

There’s a chance you will have new legislators whom you will need to educate about why you need ELSA. And that’s why we need to do all we can to get ELSA passed by the end of 2020.

How Virtual Advocacy Day Works

If you have never participated in a Virtual Advocacy Day, here’s how it will work.

Just like other years, we encourage you to have your family participate in the call, too! Please register today.

The Ensuring Lasting Smiles Act has the potential to help an enormous amount of individuals and families across the country obtain the medically-necessary procedures and treatments they desperately need and deserve.

But, we need your help to make this happen!

ELSA advocates from the NFED, ELSA supporting organizations, professional organizations, and our Congressional allies have rallied together for the past several years in support of this legislation. We have persistently advocated to educate members of Congress on the need for ELSA, share our powerful personal stories, and explain that our families have been fighting this for far too long.

Getting ELSA passed is up to us! Please join us and let’s make history.

If you have any questions about Virtual Advocacy Day, you can contact me at

If we can’t get ELSA passed by the end of the year in this session of Congress, all of us will need to start completely over with a new Congress in 2021. The bill will need to be re-introduced and the number of legislators co-sponsoring ELSA will go from our current number of 341 to 0.

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