Tina Moss shares her 61-year journey to finally make peace with her sparse hair. Affected by hypohidrotic ectodermal dysplasia, she explores wearing wigs and discovers more of herself in the process. You can also download our new Sparse and Brittle Hair Guide to get answers, product suggestions, and prevention tips from our dermatologists.
Guatemalan Family Fights to Save Their Baby
Eduardo shares his heart wrenching story to find help for his precious daughter, Arantxa. Born with incontinentia pigmenti in a country where doctors are not familiar with the condition, the sweet little girl faces extraordinary challenges. It’s a story of a family fighting against all odds to save their baby and a father sharing his emotional journey.
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.
How Clouston Syndrome Has Impacted Three Women’s Fingernails and Life
Clouston syndrome can cause significant nail abnormalities which can be a source of physical and emotional pain for many women. Read their stories for how they cope. Plus, download our new library article written by dermatologists on how to best treat the nails.
How Committed Volunteers Make the Mission
We are celebrating National Volunteer Month! It’s that special time when we salute all of you who step up and help our NFED families. Read how others are helping and how you can join our volunteer team!
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.
New Ectodermal Dysplasias International Registry Will Improve Research Efforts
The NFED is launching a new platform to connect our families with researchers worldwide. Find out how you can share your experience with ectodermal dysplasia by enrolling.
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.