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
For years, NFED has championed research to find treatments for AEC syndrome’s painful skin erosions. Now, Prof. Caterina Missero’s lab offers new hope. Her team discovered a way to bypass the damaged protein causing skin breakdown. Potentially, it could transform care and improve life for those living with this rare condition.| National Foundation for Ectodermal Dysplasias
Bringing people together is what the National Foundation for Ectodermal Dysplasias does best—especially when advancing research. This is more than science; it’s about saving lives. Read what happened at our recent Complex Wound Healing Conference in Philadelphia.| 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
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
Learn more about the risks and recommendations related to cholesteatoma for individuals with AEC, EEC, and Goltz Syndrome through a recent study published in the International Journal of Pediatric Otorhinolaryngology.| 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
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!| National Foundation for Ectodermal Dysplasias
