Talking about genetic conditions in families can be hard. Some families, like Peter and Beth’s below, may be able to trace x-linked hypohidrotic ectodermal dysplasia (XLHED) back to the 1850s. Others may be learning about it for the first time. Either way, if you are a man affected by XLHED, your female relatives might not…
Dermatology Grand Rounds Highlight Power of Patient Stories
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.
Taking Big Steps Forward: 2025 NFED Family Conference
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.
A Chance to Sweat: A Grandfather’s Legacy, A Baby’s Hope
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.
Jamie’s Decade of Sweat for Her Son
What began as one mother’s determination to raise awareness for her son’s rare condition has now grown into a beloved community event. This year marks the final Sweat It Out 5K fundraiser for the NFED, and we’re celebrating Jamie and her family’s dedication to raising awareness for their son, Nicholas, who was born with XLHED.
Colt’s Small Dentures Make a Big Difference
Meet Colt, a little boy in Texas with a big smile. He’s the fourth generation in his family to be affected by x-linked hypohidrotic ectodermal dysplasia. From not sweating in the Texas heat to wearing custom-made dentures, his journey is filled with daily challenges. Read how the dentures have changed Colt’s life and how his mom is leading “Team Colt.”
Why Lindsey and Keegan Keep Coming Back to Family Conference
Curious what brings families back to the NFED Family Conference year after year? Keegan and his mom, Lindsey, share why this event means so much to them and why after six years away, they’re attending this summer’s Conference.
How Matthew Can Help Change the Future of XLHED
Curious how a baby can help change the future of a rare genetic condition? Read how Beth and Peter joined a groundbreaking clinical trial while Beth was still pregnant, giving their son, Matthew, early treatment for XLHED. It’s an emotional, uplifting story about science, family, and hope for generations to come.