Deciding whether to wear a wig is a personal choice. Some kids and adults feel fine without one, while others find that a wig helps them feel more confident in social situations. Never force your child to wear a wig. Just giving them the option can help them feel more in control and empowered. “Wigs…
Celebrate 25 years of the Halloween Bash with us! This amazing event started as a party and grew into a huge community of families and friends helping the NFED. Come learn how it sparked big changes, supported research and brought people together. Read how this fun event made a huge difference for people affected by ectodermal dysplasias.
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….