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.
Meet Your Kids Camp Director!
Aubrey is a creative who is leading our At Home Edition of Kays’ Kids Camp and Teens Program. As a life-long member of the NFED family, she knows first-hand how important it is for kids with ectodermal dysplasia to connect and have fun.
Spend Your Summer With NFED
When we canceled Family Conference because of COVID-19, we brainstormed ways to take key components from this year’s Conference and make them virtual. Even though different communities are opening up in phases, we know that lots of you are staying at home more and looking for ways to connect. Find out how you, your kids and teens can all get your Conference fix this summer – at home!
Wonderfully Rare
Kelly and Eric Koch became first-time parents when they welcomed a beautiful healthy girl named Clara. When sweet Clara’s baby teeth erupted and were shaped differently, the Kochs started on a long and humbling journey to understand why. The answer is a diagnosis that is one of the rare of the rare. Kelly bares her heart as she shares her journey as a new mom.
How to Tell Your Advocacy Story
Telling your story is the most powerful way you can advocate for the Ensuring Lasting Smiles Act (ELSA). We know firsthand that many legislators who have co-sponsored ELSA did so because they were moved by a family’s story. Follow our tips to write and perfect your story.