The holidays can be both joyful and overwhelming, especially when managing the challenges of a rare disorder, like ectodermal dysplasia. Beth Orchard shares heartfelt insights, practical self-care tips, and strategies for thriving during this busy season. Learn how to balance responsibilities, find peace, and embrace the true spirit of the holidays.
Rising to the Challenge: Emily’s Inspiring Journey from Advocate to Civics Bee Champion
Dad’s daily civics quizzes transformed a young girl’s mornings into learning adventures, ultimately leading to a national championship and a life-changing scholarship. This inspiring story of a young girl’s dedication and achievement will leave you amazed.
Prevalence Rates: How Many People are Affected by Ectodermal Dysplasias?
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.
Our 24th Halloween Bash is a Spooktacular Success!
We are thrilled to share that our Halloween Bash 2024 was another huge success, raising significant funds to support the NFED mission!
Magic Moments, Stories of Resilience at the NFED
Magic moments happen all the time at the NFED! Marianne from the Board recalls adopting her son, Peter, from China. Affected by Clouston syndrome, Peter attended his first NFED Family Conference as a teen. Find out how it changed him. Plus, read about other Board members’ magic moments.
The NFED Is Family: Together We Can Do More
The National Foundation for Ectodermal Dysplasias (NFED) is family! That’s a common refrain whenever we talk with someone connected to our mission and vision. And, it’s true. NFED staffer Kelley Atchison talks about the joys of family connections and the frustration of not having all of the answers. But, there’s hope, knowing we can do more together!
Experiencing the Magic of Ectodermal Dysplasias Research Collaboration
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.
Dermatologist Volunteers and Creates New Resources for Ectodermal Dysplasias
Long time National Foundation for Ectodermal Dysplasias (NFED) volunteer and pediatric dermatologist Dr. Elaine Siegfried said that mentoring the next generation of doctors about the ectodermal dysplasias is one of her passions. This month, we feature one of those new doctors in our volunteer spotlight. Dr. Rylee Moody graduated from medical school at Saint Louis…