Do you have sensitive skin? Find out what products are safer for you to use. Plus, find out the best way to test them.
XLHED Clinical Trial One Step Closer to Launching
Today, we received fantastic news for x-linked hypohidrotic ectodermal dysplasia! EspeRare and Pierre Fabre announced that the ER-004 clinical trial is posted on ClinicalTrials.gov. Find out what that means and how it impacts our XLHED families.
Join Us for a Free Virtual Family Trivia Event
Grab your friends and family for a fun-filled event to end the summer! We are hosting a FREE Virtual Family Trivia and Research Celebration Event.
Lea Celebrates 10 Years at the NFED
We recognize Lea Richardson’s 10 years of service to our NFED family. Learn about her dedication and commitment as what her role is at the Foundation.
The Power of a Mother’s Love
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.
A Wig Sister is Living Her Best Hair Life
Jessica Reece has always had super thin, fragile and unmanageable hair due to EEC syndrome. Find out how trying a wig has changed her life. Plus, learn Jessica’s best tips for purchasing, choosing, caring for and styling a wig.
Volunteers Needed for Dermatology Research Survey
Dermatologist Dr. Amy Paller is researching transition readiness in adolescents with genetic chronic skin disorders, such as ectodermal dysplasia. Learn more about how you or your adolescent can participate.
A Year for the Books
2020 was filled with unprecedented global, health, economic and social challenges. That makes it doubly important that we all pause and look back on some of the great things that we’ve accomplished…with you at our side.