Find Out How Six Boys With XLHED Are Sweating Normally

Maarten and Linus were the first two boys treated before they were born with an investigational medicine for X-linked hypohidrotic ectodermal dysplasia. The boys are now 7 years old. The long-term results are incredibly positive! Read how they and the four other boys who were treated are doing.

I Learned Our Difference Makes Us One of a Kind

Lexie never wanted her friends to know she had ectodermal dysplasia. She desperately wanted to fit in and was willing to do anything to appear more like them. Now in her 20s, she shares how she overcame her shame and has embraced her uniqueness.

Missing Proteins May Contribute to Skin Fragility in AEC Syndrome

What causes skin or corneal erosions in AEC or EEC syndrome? The NFED has been collaborating with Dr. Maranke Koster and her research lab to find that answer and ultimately develop new treatments. Read the latest update and what they are learning!

My Motto: Never Ever Give Up

Meet Nicole, a determined 14-year-old girl who is using her voice on Capitol Hill to advocate for herself and others. She would like you to join her. Learn why she’s advocating and what you can do to help.

2022 Impact Report

More than forty years ago, a group of people came together with a shared goal: to help those with ectodermal dysplasias. Today, the National Foundation for Ectodermal Dysplasias (NFED) is a global leader in supporting and advocating for those affected by ectodermal dysplasias. In 2022, the NFED provided support to nearly 10,000 affected individuals worldwide.

ELSA Advocates Raise Their Voices in DC at NFED Hill Day

The air felt electric on September 19th as 172 advocates marched to the steps of the United States Capitol Building in Washington D.C.., ready to advocate for the Ensuring Lasting Smiles Act (ELSA). Read about this amazing day and what’s happening next for this important legislation.