Learn something new with our list of 14 things you didn’t know about ectodermal dysplasias!
Financial Consultant Gives Heart and Time to Help Her Son’s Tribe
Marianne Vermeer’s “guardian angel” of a dentist encouraged her to get involved with the NFED. She jumped all in becoming an active volunteer and member of the Board of Directors. Read about the powerful moment she had as a volunteer and what she’s learned about children with ectodermal dysplasia.
Top 10 Syndromes that Affect NFED Families
Learn which types of ectodermal dysplasia are the most common among NFED families. Update your profile with the type that affects your family. You and your love ones count!
Finding Success in the Water, in Law and in Love
Lawrence Dillon read John Baker’s ectodermal dysplasia story and discovered they had similar journeys. The champion swimmer and attorney talks about how he, too, has successfully navigated a lifetime of “being different” by facing it head on.
Mom of Teenager Reflects on New Prenatal Treatment for XLHED
Parents can get stuck on the “what ifs” in life and if things could have turned out differently. Becky Abbott reminisces about her son, Aidan’s journey with ectodermal dysplasia and her angst and stress. She can’t help but wonder how it all could have been different had the Edelife clinical trial been an option when she was pregnant.
Best Practices for Treating Your Ectodermal Dysplasia Teeth
You have many different treatment options for teeth affected by ectodermal dysplasia. It can be overwhelming to know what’s the best thing to do for you or your child. Learn from our dental experts which treatments to consider to achieve an age-appropriate dentition.
Developing a Non-Invasive Way to Diagnose XLHED Prenatally
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.