Since 1981, our mission has focused on families affected by ectodermal dysplasias. We are proud of the extraordinary accomplishments we have achieved in our nearly four decades. 2019 was no exception. Read to see the impact we made for our NFED family.
Dr. Karen McAndrew Helps Children Get Teeth
Prosthodontist Dr. Karen McAndrew is helping patients with ectodermal dysplasia get the treatment they need over their lifetime.
I Wanna Ask Santa for Teeth
Seeing a friend’s teeth, 3-year-old Kannon decides he’ll ask Santa for the teeth he hasn’t developed. Dr. Karen McAndrew steps in to make his first denture and his wish come true.
Tips for Face Coverings and Lines
Many of our communities have opened up to varying degrees during the past few weeks – and right at the time that summer temperatures are climbing. New safety measures for living in this COVID-19 world may bring extra challenges for people affected by ectodermal dysplasias. We have tips and resources to help you.
Volunteers Assist The Unknown
Our volunteers mean so much to us! With the help of three graduate students, our latest endeavor, the Unknown Project, has reached so many NFED members. We’ll tell you a little bit about the Unknown Project, and how these amazing individuals are helping families get a diagnosis.
Talented Gymnast Overcomes Goltz Challenges
Jordan Buerman is an anomaly in the sport of gymnastics. Not only does she have Goltz syndrome, she only has one foot and limited vision! Find out how this gymnast not only competes but at a state level!
Potential XLHED Treatment Receives FDA Breakthrough Therapy Designation
We are excited to share with you a new development in bringing a therapy for x-linked hypohidrotic ectodermal dysplasia (XLHED) to clinical trial. EspeRare announced today that the U.S. Food and Drug Administration (FDA) has granted Breakthrough Therapy Designation to the protein replacement therapy called ER-004.
Record Setting Day for ELSA
June 24, 2020 was an extraordinary day for the Ensuring Lasting Smiles Act (ELSA). It was our largest turnout ever! Hear from Congress and find out what’s next for this key legislation.