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.
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.
No Fingerprints Can Be An Ectodermal Dysplasia Thing
Do you have a hard time gripping a pen? Can swiping on your phone be frustrating? Is getting fingerprinted impossible? You are not alone. Yes, it’s an ectodermal dysplasia thing. Learn more about adermatoglyphia, its challenges and what you can do to overcome them.
Top 10 Syndromes that Affect NFED Families
Learn which types of ectodermal dysplasia are the most common among NFED families. Update your profile with the type that affects your family. You and your love ones count!
I Learned Our Difference Makes Us One of a Kind
Lexie never wanted her friends to know she had ectodermal dysplasia. She desperately wanted to fit in and was willing to do anything to appear more like them. Now in her 20s, she shares how she overcame her shame and has embraced her uniqueness.
My Motto: Never Ever Give Up
Meet Nicole, a determined 14-year-old girl who is using her voice on Capitol Hill to advocate for herself and others. She would like you to join her. Learn why she’s advocating and what you can do to help.
How I Finally Made Peace With My Hair
Tina Moss shares her 61-year journey to finally make peace with her sparse hair. Affected by hypohidrotic ectodermal dysplasia, she explores wearing wigs and discovers more of herself in the process. You can also download our new Sparse and Brittle Hair Guide to get answers, product suggestions, and prevention tips from our dermatologists.