Are you a part of the largest organization for families affected by ectodermal dysplasias? Some of our members weighed in on what they have found to be the biggest benefit of joining the National Foundation for Ectodermal Dysplasias. Find out why the NFED is where you belong!
Pediatric Dermatologist Dedicates 26 Years to the NFED Family
Pediatric dermatologists are hard to find. Fortunately, the NFED has had an excellent one on our team in Dr. Elaine Siegfried. Read how about the impact she’s made and why she thinks the NFED is different than other organizations.
A Seventh Grader’s Tips for a Great School Year
Laurel is a 12-year-old girl with ectodermal dysplasia who wants to share her school experience with other affected kids. Learn what she has to say about teaching teachers, having an IEP, managing PE and handling bullies.
We Reached New Heights Together at Family Conference
Our NFED family gathered in Colorado, for a weekend filled with educational workshops, research updates, and dental evaluations along with hugs, laughter and some tears. Mary Fete thinks it just may have been the best yet! Read about the impact, see the photos and learn where next year’s Family Conference will be!
What I Would Tell My Middle School Self
For her entire life, dentists told Finlay she would have to wait till adulthood to get treatment for her missing teeth. They didn’t seem to understand how having missing and misshapen teeth was affecting her. Find out what her frustrated parents did to get her treatment and how this experience has impacted the teenager’s outlook.
How I Finally Made Peace With My Hair
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.