Spend Your Summer With NFED

When we canceled Family Conference because of COVID-19, we brainstormed ways to take key components from this year’s Conference and make them virtual. Even though different communities are opening up in phases, we know that lots of you are staying at home more and looking for ways to connect. Find out how you, your kids and teens can all get your Conference fix this summer – at home!

Wonderfully Rare

Kelly and Eric Koch became first-time parents when they welcomed a beautiful healthy girl named Clara. When sweet Clara’s baby teeth erupted and were shaped differently, the Kochs started on a long and humbling journey to understand why. The answer is a diagnosis that is one of the rare of the rare. Kelly bares her heart as she shares her journey as a new mom.

How to Tell Your Advocacy Story

Telling your story is the most powerful way you can advocate for the Ensuring Lasting Smiles Act (ELSA). We know firsthand that many legislators who have co-sponsored ELSA did so because they were moved by a family’s story. Follow our tips to write and perfect your story.

Don’t Sweat? Here’s What You Need to Know

Keeping your body cool when your sweat glands are missing or don’t work can be a daily challenge. Our new library article explains all about sweat glands and how they work – or don’t. Learn about hypohidrosis, the signs of overheating and ways to stay cool. Families weigh in on what’s working for them.

A Grandma’s Greatest Passion

At the NFED, we hold a special place in our hearts for our volunteers. Donna Garrett-Miller is a proud volunteer who has left her mark on the ectodermal dysplasias community after just one year since her grandson was diagnosed with AEC syndrome.

Blessed On A Sunny Day

Lily’s symptoms turned Alexus Abney and her fiancé’s lives upside down. However, this sweet baby has been a blessing to their lives in many different ways.

You are Strong!

As the challenging times continue, we know a few things are certain. You are strong. Together, we are stronger. Find about the exciting projects we are launching this summer to bring us together.