Mom of Teenager Reflects on New Prenatal Treatment for XLHED

Parents can get stuck on the “what ifs” in life and if things could have turned out differently. Becky Abbott reminisces about her son, Aidan’s journey with ectodermal dysplasia and her angst and stress. She can’t help but wonder how it all could have been different had the Edelife clinical trial been an option when she was pregnant.

Developing a Non-Invasive Way to Diagnose XLHED Prenatally

The NFED is funding research to help scientists develop a new way to diagnose XLHED prenatally. Because it’s non-invasive, it would not pose any risks for the pregnant mother. Learn about the procedure and how it would help mothers who are considering the EDELIFE clinical trial.

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!

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.

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.

Celebrating 40 Years with Our Family

The 2022 NFED Family Conferece was a great success. Every year, the NFED invites the families it serves to convene at the conference to learn and most importantly, to connect. We laughed, we cried, we danced, and we can’t wait to see you next year!