No Fingerprints Can Be An Ectodermal Dysplasia Thing

Do you have a hard time gripping a pen? Can swiping on your phone be frustrating? Is getting fingerprinted impossible? You are not alone. Yes, it’s an ectodermal dysplasia thing. Learn more about adermatoglyphia, its challenges and what you can do to overcome them.

Leading the World in Research for Ectodermal Dysplasias

The NFED is pioneering innovative research on several fronts to find answers to some of our many unanswered questions. Learn about efforts to establish prevalence rates, to develop treatment protocols for wound healing in the p63 syndromes, to establish best practices for eye treatment protocols for incontinentia pigmenti and more.

Our Impact Report – 2023

Learn how the NFED’s unwavering passion translated into concrete action for our ectodermal dysplasias community. Look back on the expanded support, research advances, and advocacy efforts that shaped 2023. Together, we achieved great things!

From Fragile to Thriving: The First 15 Years of Living with AEC Syndrome

Joshua has endured 51 surgeries, life-threatening skin infections, overheating challenges and ever weeping eyes. His mom looks back on his childhood and journals about the medical issues Joshua faced and how they treated them. Read how this teenager is embracing life as an adventure and educating others about having AEC syndrome.

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…

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!