Incontinentia pigmenti is a type of ectodermal dysplasia with challenging and complex symptoms. We need more research to understand it better, develop treatments and help parents like Shari Ezell, realize their dreams for their children.
Melissa Pierce was used to advocating to Congress for important causes. But not for one that directly impacted her only family. She shares the unexpected emotional experience of explaining how the Ensuring Lasting Smiles Act would impact her family and thousands of others.
The late JoAnna Daniel Nix wanted other women affected by ectodermal dysplasias to benefit from her wigs. It’s our honor to give them away in her loving memory. See how you can apply.
What do you hope and dream for? Read what six families dream about and NFED’s research campaign to make those dreams come true.
Jill Radley has spent the last few decades as her son’s biggest cheerleader and advocate. But, she recently used her voice to advocate and tell HER story with ectodermal dysplasia. A teacher at heart, she’s sharing her wisdom with students, other parents and women about the attitude to take when life hands you challenges.
Even the tallest mountains can be scaled with enough small but purposeful steps Forever Forward. But not without decades of careful study, testing, steps forward, steps back, and the love and devotion of parents, families and you! Learn how you can help us with our campaign to advance research.
The Ensuring Lasting Smiles Act hit another milestone in our journey to get it made into law. And, we are celebrating! Find out what happened and what’s next.
Hypodontia is one of the typical symptoms of ectodermal dysplasias. It means that one or more teeth are congenitally missing and may be small. For many affected individuals, it’s common to have just a few teeth. At the National Foundation for Ectodermal Dysplasias, we have always advocated that children – and adults – with ectodermal…