Why the EDELIFE Clinical Trial is Just for XLHED Boys

The EDELIFE Clinical Trial is investigating a potential treatment for boys affected by x-linked hypohidrotic ectodermal dysplasia (XLHED). Some of you have asked why the clinical trial is focused only on boys and not girls with XLHED. Find out why.

An Easy Way to Double Your Impact at the NFED

Would you like to help search for free money for the NFED? It’s as easy as seeing if your company has a matching gifts program. Learn how these programs work and use our easy tool to see if your company will match your gifts.

Coming to Family Conference? Explore Colorado!

One of the best things you can do this summer is turn your Family Conference trip into a family vacation! Colorado is a beautiful place to explore and has something for everyone. Tack on a few days before or after the Conference for the perfect summer getaway. Our Conference will take place in Broomfield, Colorado,…

How Global Work Groups are Advancing Ectodermal Dysplasias Research

In 2021, we convened leaders in the medical and scientific community to envision and outline a research initiative for the next several years for the NFED. Read how scientists, care providers and patient advocates have been working together in four key areas, what they plan to achieve and what it means for the ectodermal dysplasias community.

All Things Family Conference

On February 15, I had the pleasure of joining some new and returning families on a webinar to answer all of their questions about the NFED Family Conference, which will take place July 14 – 16. If you weren’t able to join us at the webinar, I want to share some of the great questions…

Longing for a Community of People Who Understand

Nicholle was searching for someone who understood what it’s like to always smile with your lips closed so people don’t see your missing teeth. Who know how frustrating it is to visit dentist after dentist trying to find someone who actually wants to treat you. Were there adults out there who know the pressure of trying to find more than $30,000 just so you can have teeth to bite into chicken with? Read her story to learn about her search and how she’s relieved to no longer feel so alone.