Rise Up and Celebrate Caregivers

Today, we rise up and celebrate all of the caregivers around the world as part of Ectodermal Dysplasias Awareness Month! We pay tribute to everyone who has made someone’s ectodermal dysplasia journey a little easier.

It’s Time to Rise Up for Rare!

You are invited to join us to celebrate our community! It’s Ectodermal Dysplasias Awareness Month and we have lots of fun ways for you to get involved and spread the word.

How You Can Volunteer in a Pandemic

Despite the crazy year of quarantine that 2020 was, numerous NFED volunteers still found ways to raise money and awareness for the NFED mission. Find out how you can get creative and get involved!

We Celebrate Ectodermal Dysplasias globally!

The National Foundation for Ectodermal Dysplasias (NFED) has been celebrating Ectodermal Dysplasias Awareness Month throughout February and Rising Up for Rare! But today, 2-20-2020, we join with the ectodermal dysplasias support groups in other countries to celebrate the first International Ectodermal Dysplasias Awareness Day. We are very proud of our international partners and collaborations! Let…

What It Means to Have Ectodermal Dysplasias

Ectodermal dysplasias are genetic disorders that can be inherited from your parents or happen more spontaneously by changes (or mutations) in your genes before you’re born. They affect about three out of every 10,000 babies. But ectodermal dysplasias are much more than a hidden genetic issue. The disorders are characterized by abnormally functioning hair, nails,…