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.
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.
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.
NFED mom and advocate, Samantha Mueller, has passionately advocated for the Ensuring Lasting Smiles Act since its beginning. She encourages families to take action using her easy tips!
It’s extraordinary what our advocates and staff have accomplished in just two months since the Ensuring Lasting Smiles Act (ELSA) (S.754/H.R.1916) was re-introduced in the 117th Congress! Our brave advocates shared their struggles on our Virtual Advocacy Day on Capitol Hill. Find out what’s happened with ELSA since they shared their stories.
ELSA begins its journey in the 117th Congress with incredible bi-partisan support! Find out what this means and how you can help make this important bill become a law.
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.
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.