At eight years old, this volunteer met other people with ectodermal dysplasia for the first time at an NFED Family Conference. That feeling of belonging inspired her as an adult to give back. Read how speaking on panels, mentoring teens and helping families turned a childhood memory into a meaningful way to serve others.
Jalen’s EEC Syndrome Story: Why Challenges Don’t Define Her
Jalen’s EEC syndrome story is filled with honesty, humor, and heart. She shares how she handled hair loss, bullying, and everyday challenges while building confidence along the way.
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!
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.
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.
Finding My Diagnosis, My Voice and a Community That Gets It
Imagine going 37 years without knowing why you faced so many health struggles. That was Lindsey’s life until she finally got answers. In this blog, she shares her journey from silence to strength, how she found community, and why she’s determined to advocate for her kids.
Taking Big Steps Forward: 2025 NFED Family Conference
Nearly 300 attendees, including over 100 first-timers from five countries, gathered in Minneapolis for the 2025 NFED Family Conference. It was a heartwarming reunion filled with laughter, learning, advocacy, and unforgettable moments. Together, we took big steps forward, and left feeling inspired, supported, and filled with hope for what’s ahead.
Why Lindsey and Keegan Keep Coming Back to Family Conference
Curious what brings families back to the NFED Family Conference year after year? Keegan and his mom, Lindsey, share why this event means so much to them and why after six years away, they’re attending this summer’s Conference.