Clouston syndrome can cause significant nail abnormalities which can be a source of physical and emotional pain for many women. Read their stories for how they cope. Plus, download our new library article written by dermatologists on how to best treat the nails.
We are celebrating National Volunteer Month! It’s that special time when we salute all of you who step up and help our NFED families. Read how others are helping and how you can join our volunteer team!
It took years for a South Carolina family to find a dentist to make dentures for their son. Getting Beau to wear them was their next challenge. Read how strawberry Twizzlers made all the difference.
The NFED is launching a new platform to connect our families with researchers worldwide. Find out how you can share your experience with ectodermal dysplasia by enrolling.
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.
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.
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,…
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.