The NFED Celebrates 40 Years!

The NFED turned 40 on December 24, 2021. At our Family Conference in July, we celebrated this incredible milestone with a Gala. It was a magical night filled with awards, Ally Kelso singing “We Can’t Smile Without You”, dancing, fundraising and lots of laughs! We are proud of what we have accomplished and look forward to the next 40 years. Look back at 40 years of pictures and accomplishments by clicking here

We celebrated when the U.S. House of Representatives passed the Ensuring Lasting Smiles Act (S.754/H.R.1916) on April 5, 2022! Our passionate advocates worked feverishly to get it to pass in the U.S. Senate. Unfortunately, that didn’t happen before the end of the 117th Congress but efforts resume with the 118th Congress.

The NFED is leading the ELSA Network which is comprised of more than 70 organizations. We hosted three Virtual Advocacy Days on Capitol Hill to ask Congress to support ELSA. Our families bravely shared their stories.

When passed, this federal bill will provide health care benefits for the medical and dental treatment of not just ectodermal dysplasias, but all congenital anomalies. Click here to learn more about ELSA.

It was pure joy in July when the NFED gathered for our Family Conference for the first time since 2019! Connecting families is what we do best. Together, we are better.