This blog offers a fresh take on building sustainable habits for better mental, physical, and spiritual wellness. Discover tips on mindful social media use, creative ways to stay active, and how to build meaningful connections—especially within the NFED community. Read more now!
New Congress, New Opportunities: How You Can Help Pass the Ensuring Lasting Smiles Act
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.
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!
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!
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.