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,…
This Law is For You
Have you spent a year or more fighting for a health insurance claim? What has the emotional and financial impact been on you and your family when you go without care? Continual insurance denials needlessly take a toll on you and your health. The Ensuring Lasting Smiles Act can change all that. Your involvement right now is critical.
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.