We’re excited to share that our Executive Director, Mary Fete, was featured on an episode of the Chief Influencer podcast! Mary discusses how leadership has shaped her work, and what our mission has done to make an impact.
Dermatology Grand Rounds Highlight Power of Patient Stories
Curious how NFED families are helping doctors truly understand ectodermal dysplasias? Check out how twelve individuals stepped up to teach med students and doctors about ectodermal dysplasias at a recent Dermatology Grand Rounds. Their personal experiences provided a powerful way for the health care professionals to learn about these rare conditions so they can better diagnose and treat them.
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.
A Chance to Sweat: A Grandfather’s Legacy, A Baby’s Hope
What if a decision made decades ago could change your baby’s future? That’s exactly what happened in Jack’s family. From grandpa’s sweat-free childhood to baby Jack’s groundbreaking treatment, this story connects generations, science, and heart. You’ll want to read how one family’s bravery is shaping the future of XLHED.
How a Mom and Daughter Held Their Own Impromptu Day on the Hill
When nine-year-old Keira and her mom, Tara, realized Maryland lawmakers hadn’t signed on to support the Ensuring Lasting Smiles Act (ELSA), they took action. With no meetings scheduled, they hit Capitol Hill, shared Keira’s powerful story, and made a big impact. Read about their bravery and how lawmakers took notice. Plus, find out creative ways you can advocate for ELSA.
Kristin Matus-Kelso Joins NFED Staff
Meet Kristin Matus-Kelso, our new Family and Community Programs Coordinator! With 20 years of personal experience in the ectodermal dysplasia community, Kristin is no stranger to the NFED.
NFED Partners with The Aspen Group to Provide Free Dental Care
The National Foundation for Ectodermal Dysplasias (NFED) has been collaborating for over a year with The Aspen Group to create a charitable referral connection for families. We are pleased to announce the formal launch of the Smile Bridge program to provide 15 identified patients free clinical dental care, to include implants, up to their age of 22.
Discover a Newer Syndrome: TSPEAR-related Ectodermal Dysplasia
Never heard of TSPEAR-related ectodermal dysplasia? You’re not alone! It’s one of the more rare and newer types. Read this blog to learn more. Two moms share their honest, real-life stories about getting a diagnosis, navigating symptoms like missing teeth and overheating, and finding support.