It’s an exciting time in research with science and genomics advancing at an incredible rate. To chart a course for research efforts for the next several years, the NFED will host an International Ectodermal Dysplasias Research Conference this fall.
Volunteers Help Families Learn About Their Rare Disorder
We love when new volunteers step up to help the National Foundation for Ectodermal Dysplasias (NFED)! This month, we shine the spotlight on two genetic counseling students who are helping us with the Unknown Project.
AEC Syndrome: What to Know If Your Baby is Affected
If your baby has been diagnosed with ankyloblepharon-ectodermal defects-cleft lip and/or palate (AEC) syndrome or if you suspect he or she might be affected, you have come to the right place! Here are some key things to know and resources to help you care for your baby.
Kannon’s New Love to Crunch, Smash and Chew
This story follows-up on Kannon Koser and how he’s adjusting to his new denture! Find out how it’s impacted his speech and eating and what his parents did to get him to wear it.
Leaving My Comfort Zone to Advocate For My Family
As a self-described, shy, introvert, Sarah Ward could never have imagined that she would be meeting with Congress to talk about her family’s rare genetic disorder. The passionate advocate shares her journey and why she has found the strength to speak up!
10 Great Tips for Advocating for ELSA
NFED mom and advocate, Samantha Mueller, has passionately advocated for the Ensuring Lasting Smiles Act since its beginning. She encourages families to take action using her easy tips!
New Insurance Section on Website
Getting your health insurance to pay for your dental care can be tough. We can help! Use our expanded insurance resources to map out your journey to success!
A Smile Is the Best Makeup Any Girl Can Wear
Elizabeth Hoverman faced treatment failures and a pandemic delay to get her beautiful smile. The artist shares her exhausting six-year journey and why she can’t stop smiling.