The NFED is funding research to help scientists develop a new way to diagnose XLHED prenatally. Because it’s non-invasive, it would not pose any risks for the pregnant mother. Learn about the procedure and how it would help mothers who are considering the EDELIFE clinical trial.
Choose Positivity and Live the Life You Want
When John was born in the 1950s with HED, he spent most of his toddler years indoors, on doctor’s advice. Then his family’s minister said something to his parents that changed his life forever. The retired U.S. Navy Federal Service employee looks back on growing up with HED and the philosophy that spurred his success. He also shares his best tips for dealing with the heat when you can’t sweat.
Find Out How Six Boys With XLHED Are Sweating Normally
Maarten and Linus were the first two boys treated before they were born with an investigational medicine for X-linked hypohidrotic ectodermal dysplasia. The boys are now 7 years old. The long-term results are incredibly positive! Read how they and the four other boys who were treated are doing.
Two-Year-Old Struggles to Eat With Just one Tooth
Jackson is 2 years old, and he’s hungry all the time. He wants to eat. But chewing is just too difficult for him, and he struggles to eat every day. Read how his parents are coping with meal time and helping their toddler who’s affected by x-linked hypohidrotic ectodermal dysplasia. Plus, download our new medical article, Feeding Solid Food to Children Without Teeth.
4-Year-Old Wants to Bite Something With His New Dentures
It took years for a South Carolina family to find a dentist to make dentures for their son. Getting Beau to wear them was their next challenge. Read how strawberry Twizzlers made all the difference.
Why the EDELIFE Clinical Trial is Just for XLHED Boys
The EDELIFE Clinical Trial is investigating a potential treatment for boys affected by x-linked hypohidrotic ectodermal dysplasia (XLHED). Some of you have asked why the clinical trial is focused only on boys and not girls with XLHED. Find out why.
How Global Work Groups are Advancing Ectodermal Dysplasias Research
In 2021, we convened leaders in the medical and scientific community to envision and outline a research initiative for the next several years for the NFED. Read how scientists, care providers and patient advocates have been working together in four key areas, what they plan to achieve and what it means for the ectodermal dysplasias community.
Remembering Mary K. Richter With Great Love
Our hearts are heavy. The matriarch of our National Foundation for Ectodermal Dysplasias (NFED) family, Mary K. Richter recently died. We know this has come as a shock for our community. Amidst our profound sadness, join us as we remember this incredible woman.