The Nelson family was committed to getting their unborn son a potentially life-changing treatment for his XLHED. But, that meant traveling across the world-twice-in the middle of a pandemic! Learn more about their incredible adventure and how their son is doing.
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!
Jamie Sommerville shares her best tips for how to get your insurance company to cover the dental treatment you need. Plus, learn what NFED resources made all the difference.
A mom’s dream to give her unborn son working sweat glands sent her on a journey around the world during a pandemic. Watch this video to hear her story and the treatment for x-linked hypohidrotic ectodermal dysplasia they received.
Kaitlyn Squibb knew all the ways that x-linked hypohidrotic ectodermal dysplasia affected her body. But, she’s finding strength as she learns how it impacts her emotions, too.
After a challenging year, we are excited to share some good news – just in time for the holidays! The EspeRare Foundation announced a new partnership today that brings us closer to developing a potential treatment for x-linked hypohidrotic ectodermal dysplasia (XLHED). EspeRare and Pierre Fabre group have entered into an agreement to develop and…
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.