The NFED Family Rises Up for Rare

It’s Ectodermal Dysplasia Awareness Month, and we’re sharing a few stories of hope that have stuck with us. Revisit stories from those who’ve risen above the diagnosis to help and inspire others.

No Human is Limited!

Markus Kappen can’t sweat but hasn’t let that stop him from competing in triathlons. He says that you don’t choose your passion. Passion chooses you without you even noticing. In this inspirational story, he shares what he’s learned, the obstacles he overcame and what his next passion looks like.

Tellin’ the Truth About Advocacy

Have you ever said to yourself that you can’t advocate because you don’t know what you are doing or don’t have the time or can’t travel? NFED advocate Beth Orchard dispels those myths and empowers you to take action.

Rise Up and Volunteer

February is Ectodermal Dysplasias Awareness Month. It’s a perfect opportunity to take action for the NFED family. Check out these ideas for easy ways to fundraise and make a difference.

XLHED Natural History Study Findings Published

The NFED is proud to have funded the first comprehensive investigation of the natural course of XLHED, the most common ectodermal dysplasia, from birth until the age of five years.
Findings from this Natural History Study were recently published in the Orphanet Journal of Rare Diseases. Read more to learn what they found and how the data will be used for the upcoming clinical trial.

Big Plans for 2020

The NFED has new things in store for the ectodermal dysplasias community in 2020. Find out what we have planned and how you can be a part of it.

Free Ectodermal Dysplasia Webinars

We are excited to announce our webinar series for 2020: Conference from your Couch! Join us on the second Wednesday of every other month in 2020 at 7 p.m. central for FREE webinars to learn more about ectodermal dysplasias, symptoms, treatments and research.

It’s In Your Hands

Lynne Thomas knew that ectodermal dysplasia affected hair, teeth and sweat glands. But a series of life experiences raised questions about her grip and fingerprints. Learn more about these unique syndromes.