People often ask, "How many individuals are affected by ectodermal dysplasias?" It’s a challenging question to answer, since they are rare conditions. A team of NFED researchers now has an answer. Read to learn just how prevalent ectodermal dysplasias are and why these numbers are important.| National Foundation for Ectodermal Dysplasias
Discover the incredible journey of XLHED research, where dedicated families and tireless efforts have led to life-changing breakthroughs. This inspiring story highlights how your participation can help shape the future of XLHED treatments. Don’t miss it!| National Foundation for Ectodermal Dysplasias
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.| National Foundation for Ectodermal Dysplasias
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.| National Foundation for Ectodermal Dysplasias
Dr. Schneider and his team of investigators have published their groundbreaking research results in a “Prenatal Correction of X-Linked Hypohidrotic Ectodermal Dysplasia.” We are thrilled to share with you key highlights from their research, what it means for our families affected by XLHED, and the next steps.| National Foundation for Ectodermal Dysplasias
Searching for a diagnosis can be frustrating. Often, the diagnosis is delayed because providers don’t realize that ectodermal dysplasia is the cause for| National Foundation for Ectodermal Dysplasias
Keeping your body cool when your sweat glands are missing or don't work can be a daily challenge. Our new library article explains all about sweat glands and how they work - or don't. Learn about hypohidrosis, the signs of overheating and ways to stay cool. Families weigh in on what's working for them.| National Foundation for Ectodermal Dysplasias
The NFED Family Conference is more than an event—it’s where connections thrive, and worries melt away. Like the Cheers theme song, it’s a place “where everybody knows your name.” Don't just take Kelley Atchison's word for it. Listen as NFED families share the impact the Conference had on them. Family Conference is a collection of stories of hope- we would love to see you there!| National Foundation for Ectodermal Dysplasias
Let's look back at joyous moments of 2024 brought to us by talented teenagers, a miracle baby, dedicated parents, a dad-daughter cycling team and others. From a clinical trial to personal milestones, their stories inspire and capture the heart of the NFED.| National Foundation for Ectodermal Dysplasias
Jacobi Sebock's killing it on the basketball court and getting attention from the likes of NBA player, Steph Curry. He excelled in both basketball and track his senior year, not letting his inability to sweat hold him back. Watch this All-State athlete dunk and find out the big dreams he has.| National Foundation for Ectodermal Dysplasias
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.| National Foundation for Ectodermal Dysplasias
People with certain types of ectodermal dysplasia are not able to sweat normally. Because of this inability to sweat, people with this symptom need to be| National Foundation for Ectodermal Dysplasias
It's March Madness! Think playing college basketball is tough? Try doing it without sweat glands! Jacobi doesn’t just play—he’s excelling, despite having XLHED. From figuring out how to regulate his body temperature to throwing down jaw-dropping dunks, his journey is nothing short of inspiring. Learn what he has to say to the next generation of athletes with XLHED.| National Foundation for Ectodermal Dysplasias
Pediatric dermatologists are hard to find. Fortunately, the NFED has had an excellent one on our team in Dr. Elaine Siegfried. Read how about the impact she's made and why she thinks the NFED is different than other organizations.| National Foundation for Ectodermal Dysplasias
The EspeRare Foundation and Pierre Fabre Medicament seek to develop the first treatment for x-linked hypohidrotic ectodermal dysplasia (XLHED). They are| 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
