Helping Your Child Deal with Ectodermal Dysplasia through Each Age and Stage It can be helpful to start any conversation (about a medical diagnosis, about a treatment, etc.) by asking your child what they already know, what questions they have and what they want to know. It is best to be honest with your child…
Because of you… we did more in 2024! As we look back on 2024, we are filled with gratitude and hope. This year, more families reached out to the NFED than ever before—a 29% increase—and our community now spans 121 countries. Behind every number is a person with a story: children smiling with new confidence…
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.
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.
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.
Let me introduce you to Joshua. Born with a rare form of ectodermal dysplasia, Joshua faced overwhelming challenges from his very first breath. His fragile skin, multiple surgeries, and countless infections could have broken his spirit. Instead, they shaped his resilience. For the first 17 days of Joshua’s life, doctors were unsure of his diagnosis….
We understand that wound healing presents a significant challenge for individuals with TP63 syndromes. This is why we are thrilled to share that the National Foundation for Ectodermal Dysplasias (NFED) will host a wound healing conference in just a few weeks, November 3-5. The collaborative Complex Wounds in Ectodermal Dysplasias Conference will occur at the…
The National Foundation for Ectodermal Dysplasias (NFED) and researchers at East Carolina University (Dr. Maranke Koster & Shirley Parraga) are recruiting research subjects to participate in a new collaborative research project.