Responding to the Insurance Shock

Melissa Pierce was used to advocating to Congress for important causes. But not for one that directly impacted her only family. She shares the unexpected emotional experience of explaining how the Ensuring Lasting Smiles Act would impact her family and thousands of others.

2019 Annual Impact Report

Since 1981, our mission has focused on families affected by ectodermal dysplasias. We are proud of the extraordinary accomplishments we have achieved in our nearly four decades. 2019 was no exception. Read to see the impact we made for our NFED family.

Record Setting Day for ELSA

June 24, 2020 was an extraordinary day for the Ensuring Lasting Smiles Act (ELSA). It was our largest turnout ever! Hear from Congress and find out what’s next for this key legislation.

How to Tell Your Advocacy Story

Telling your story is the most powerful way you can advocate for the Ensuring Lasting Smiles Act (ELSA). We know firsthand that many legislators who have co-sponsored ELSA did so because they were moved by a family’s story. Follow our tips to write and perfect your story.

How Virtual Advocacy Day Works

Find out how easy it is to participate in a Virtual Advocacy Day! We’ll you through the process of how you can raise your voice and help move the Ensuring Lasting Smiles Act through Congress.

Family Conference Canceled Due to Coronavirus

To protect the health and safety of families affected by ectodermal dysplasias, the NFED has canceled our 2020 Family Conference in Washington D.C.

Share Your Story with the Press

Sharing stories with local press is a powerful tool to raise awareness about ectodermal dysplasias and the challenges many face getting the health insurance coverage they need. Christine Gottschalk details how families and individuals can raise awareness for the Ensuing Lasting Smiles Act through the press.