The new 119th United States Congress began on January 3. What does this mean for the Ensuring Lasting Smiles Act (ELSA)? Find out what has shifted, how we’re moving forward and what you can do to help us get this important legislation passed.
You Inspire Me: Cue the Happy Tears!
Let’s look back at joyous moments of 2024 brought to us by talented teenagers, a miracle baby, dedicated parents, a dad-daughter cycling team and others. From a clinical trial to personal milestones, their stories inspire and capture the heart of the NFED.
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.
Volunteer Jordan: A Voice for Ectodermal Dysplasias
Jordan Kahn, a passionate advocate for the NFED, shares his inspiring story of supporting his daughters with hypohidrotic ectodermal dysplasia (HED). As a state lead for Maryland, he’s dedicated countless hours to raising awareness and advocating for legislation that impacts those with ectodermal dysplasias. Discover why Jordan is so committed to the NFED and how you can join him in making a difference.
The Stand Together Advocacy Conference Was Awesome
Our Stand Together Advocacy Conference was a whirlwind of excitement and unity! We welcomed not only our families but also care providers and members of other organizations. Our goal was to empower them to advocate for themselves and on Capitol Hill. Watch the highlight reel and read about our great success and new friends made!
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…