Get the Latest News on the Ensuring Lasting Smiles Act

It may seem like the Ensuring Lasting Smiles Act (ELSA) has stalled in the 118th Congress. However, we are taking a different approach. Find out what’s happening with this critical legislation and what you can do to help.

The Impact of Volunteers on the NFED

It’s Volunteer Appreciation Week and we have a lot of people to celebrate and thank. Our committed volunteers span the globe and lend their time, skills, and passion to make a real difference.

Advocacy 101: Make Your Story Known For ELSA

Make Your Story Known For ELSA Dealing with a rare condition like ectodermal dysplasia can be very challenging, especially when it comes to navigating the healthcare system. The National Foundation for Ectodermal Dysplasias (NFED) is here to help you get the necessary care. One effective way to achieve this is through legislative advocacy and sharing…

How The Stand Together Conference is Unique This Year

This year’s summer event is going to look a little different than other years. Find out what you can expect when you attend the Stand Together Advocacy Conference and how you’ll leave empowered to advocate for yourself at home and on Capitol Hill!

Financial Consultant Gives Heart and Time to Help Her Son’s Tribe

Marianne Vermeer’s “guardian angel” of a dentist encouraged her to get involved with the NFED. She jumped all in becoming an active volunteer and member of the Board of Directors. Read about the powerful moment she had as a volunteer and what she’s learned about children with ectodermal dysplasia.

My Motto: Never Ever Give Up

Meet Nicole, a determined 14-year-old girl who is using her voice on Capitol Hill to advocate for herself and others. She would like you to join her. Learn why she’s advocating and what you can do to help.

ELSA Advocates Raise Their Voices in DC at NFED Hill Day

The air felt electric on September 19th as 172 advocates marched to the steps of the United States Capitol Building in Washington D.C.., ready to advocate for the Ensuring Lasting Smiles Act (ELSA). Read about this amazing day and what’s happening next for this important legislation.

What I Would Tell My Middle School Self

For her entire life, dentists told Finlay she would have to wait till adulthood to get treatment for her missing teeth. They didn’t seem to understand how having missing and misshapen teeth was affecting her. Find out what her frustrated parents did to get her treatment and how this experience has impacted the teenager’s outlook.