Curious how NFED families are helping doctors truly understand ectodermal dysplasias? Check out how twelve individuals stepped up to teach med students and doctors about ectodermal dysplasias at a recent Dermatology Grand Rounds. Their personal experiences provided a powerful way for the health care professionals to learn about these rare conditions so they can better diagnose and treat them.| National Foundation for Ectodermal Dysplasias
Nearly 300 attendees, including over 100 first-timers from five countries, gathered in Minneapolis for the 2025 NFED Family Conference. It was a heartwarming reunion filled with laughter, learning, advocacy, and unforgettable moments. Together, we took big steps forward, and left feeling inspired, supported, and filled with hope for what’s ahead.| National Foundation for Ectodermal Dysplasias
What if a decision made decades ago could change your baby’s future? That’s exactly what happened in Jack’s family. From grandpa’s sweat-free childhood to baby Jack’s groundbreaking treatment, this story connects generations, science, and heart. You’ll want to read how one family’s bravery is shaping the future of XLHED.| National Foundation for Ectodermal Dysplasias
Women who are exploring prenatal treatment for their son affected by x-linked hypohidrotic ectodermal dysplasia (XLHED) now have an additional site to consider. The Edelife Clinical Trial has added a site at Cedars-Sinai Medical Center in Los Angeles (LA), California.| National Foundation for Ectodermal Dysplasias