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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.

Thank You, for Keeping NFED Forever Strong!

From all of us to all of you…thank you! Your kindness, your generosity, and your loving support make our kids and families – and the National Foundation for Ectodermal Dysplasias – Forever Strong! Watch our thank you video message.