Amelia is a teenager who is affected by ankyloblepharon-ectodermal dysplasia-cleft lip and/or palate (AEC) syndrome. When she was born, she had toes that were connected and a few other signs that were different. She started turning blue at two hours and lived in the NICU for months. She was suffering from chonal atresia. Maggie, her mom,…
After running the Hot Chocolate 5K in 2013, and thoroughly enjoying myself, I set a goal for myself to run at least three 5K’s and a 15K before the end of 2014. It had been years since I last ran competitively, but I’ve learned a thing or two about smashing limits in my lifetime. As…
You Have the Opportunity to Share Your Eye Concerns With Researcher By Jack Kriz I am so excited! I mean really, really, excited! Dr. Colin E. Willoughby will attend this year’s National Family Conference! Who is this doctor? Well, early this year, NFED staffer Mary Fete, shared with me some info about a researcher from Belfast…
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!
What are you doing on Tuesday, November 28? It’s Almost #GivingNFEDTuesday! Are you going shopping on Black Friday? Or Small Business Saturday? Or Cyber Monday? Will you celebrate with us? While you’re searching for the perfect gifts, we invite you to give the gift of making a difference and help us reach new heights in…
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.
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.
Jayden Clark’s skin as a baby was so fragile at one point it caused a life threatening infection. Even small brushes of his skin could cause it to breakdown. Now 19, Jayden is a thrill seeker! Learn more about his extensive medical journey, his passions and the special message he has for others with ectodermal dysplasias who find it hard to smile.