At eight years old, this volunteer met other people with ectodermal dysplasia for the first time at an NFED Family Conference. That feeling of belonging inspired her as an adult to give back. Read how speaking on panels, mentoring teens and helping families turned a childhood memory into a meaningful way to serve others.
Why We Still Need ELSA
Ten years later, we’re still fighting for ELSA—and it still matters. Soren and Morgan share why families need fair coverage and how advocacy brings hope. Learn what you can do to take action in your home state.
Government Shut Down Doesn’t Stop ELSA Advocates
Even a government shutdown couldn’t stop our amazing ELSA advocates! More than 150 people met with lawmakers in Washington, D.C. Find out how NFED families and friends made big progress for the Ensuring Lasting Smiles Act on Capitol Hill! Learn how you can help keep the momentum going to get ELSA passed.
How My Daughter and I Brought ELSA Advocacy Home to Utah
Read how a mom and her daughter from Utah worked hard to share their story and talk with lawmakers about the Ensuring Lasting Smiles Act. Their journey shows how being kind, not giving up, and meeting in person can make a big difference for families like theirs and for ELSA. She walks you through step by step what she did to be successful.
Rising to the Challenge: Emily’s Inspiring Journey from Advocate to Civics Bee Champion
Dad’s daily civics quizzes transformed a young girl’s mornings into learning adventures, ultimately leading to a national championship and a life-changing scholarship. This inspiring story of a young girl’s dedication and achievement will leave you amazed.
Being Born Without Adult Teeth: From Resentment to Empowerment
Soren Roe used to hide the fact that he’s missing teeth. Now, he uses it as an opening line when he meets new people. Read how this 24-year-old has faced his fears and realized how ectodermal dysplasia has shaped his life.
Brave ELSA Advocates Pour Out Their Hearts to Legislators
Three hundred brave advocates from 46 states shared their heartbreaking stories with U.S. legislators at this year’s Virtual Advocacy Day on Capitol Hill. They talked about the numerous surgeries and ongoing treatments they or their child has needed and how insurance companies won’t pay for it. With the House voting on April 4 for ELSA, find out what you can do to help.
Big News in the House for ELSA
Families affected by congenital anomalies are closer to getting health insurance benefits for the medical and health treatment they need. Our bill to mandate such payments took a big leap in the U.S. House of Representatives. Find out what the consensus calendar means and how you can help pass the Ensuring Lasting Smiles Act.