Ten years later, we’re still fighting for ELSA—and it still matters. Soren and Morgan share why families need fair coverage and how advocacy brings hope. Learn what you can do to take action in your home state.
45 Years of NFED: How One Mom Changed Everything
In 1981, one mom had an idea that changed everything. Forty-five years later, the NFED has grown into a global community of 11,100 families. Read how we got here and look back and marvel at 45 accomplishments in 45 years!
Ectodermal Dysplasias Resources in the Age of AI: What Every Family Should Know
For 45 years, the NFED has met families where they are, from typewriters to TikTok. Now comes AI. Before you search, here’s what you need to know to stay safe, informed and connected to the people who matter most.
Small NFED Fundraisers, Real Impact
Our families have found creative ways to fundraise for the NFED doing things that they love. Find out how they made friends, built community, and raised awareness along the way. Get inspired to have your own small fundraiser and make an impact!
Finding Faith, Recovery and Confidence, One Smile at a Time
Paul grew up feeling different and was bullied for his teeth. He followed a dark path for many years before deciding he wanted a different life. Today, he’s sober, married and helping others. His journey is honest and hopeful and living proof that no matter your past, your future can still be bright.
Join Our Team: Director of Research
Be the Bridge Between Science and Hope The National Foundation for Ectodermal Dysplasias (NFED) is seeking a passionate, collaborative leader to serve as our Director of Research. This is your opportunity to make a lasting impact in the rare disease community by connecting groundbreaking research with the families who need it most. About This Role…
Four Boys Who are Changing the Story of XLHED
Four little boys helped change the future of XLHED. Their families took brave steps. Researchers worked hard. And today, these boys are growing, playing sports, and sweating normally. Want to feel hopeful about what’s ahead? Read how Maarten, Linus, Finley, and Bennett are doing and how your family might qualify for the prenatal treatment they received.
Top 5 Reasons You Can’t Miss the NFED Family Conference This Year
Thinking about coming to the Family Conference? This blog shares five big reasons you won’t regret it—from finding your family and learning from experts to giving your child true belonging. Add in hope, hugs, pool parties, and an ’80s dance bash, and you’ve got a summer highlight you’ll never forget.