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!
#GivingNFEDTuesday 2023
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 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.
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.
The Smile That Means The Most to Me
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.
Families Educate 50 Doctors and Students About Their Unique Ectodermal Dysplasias Symptoms
Learning about rare conditions like ectodermal dysplasias in a medical journal article or textbook is certainly valuable for medical professionals. But, getting to meet eight individuals with seven different types of ectodermal dysplasias all in one morning is a unique and extraordinary opportunity! More than 50 dermatology professionals at Saint Louis University got that chance thanks to our families.
2022 Grand Rounds – Zane
Hi. My name is Zane. I am 14 years old, and I am affected by Ankyloblepharon-Ectodermal Defects-Cleft Lip and/or Palate (AEC) Syndrome. I like to read, spend time with my friends, and recently built a gaming computer. I enjoy trying different sports and played basketball this past season. I was born at 35 weeks 5…
Forty Years of Driving Ectodermal Dysplasias Research
As we celebrate our 40th anniversary and reflect on the journey to this point, we can say with certainty that no other entity in the world has driven ectodermal dysplasias research more than the National Foundation for Ectodermal Dysplasias (NFED). It’s been our honor to lead. Yet, the gratitude goes to the families who volunteered for studies, the curious researchers who strived to make a difference, and the donors who funded the vision. Let’s look at four decades of advancing research!