2020 was filled with unprecedented global, health, economic and social challenges. That makes it doubly important that we all pause and look back on some of the great things that we’ve accomplished…with you at our side.
We are excited to share that we have added three new Dental Treatment Centers! Families affected by ectodermal dysplasias now have 22 different centers across the United States to consider for their oral health care. One of these centers is offering free dentures for children under 8.
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.
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.
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.
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.
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!
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!