The National Foundation for Ectodermal Dysplasias (NFED) recognized several individuals and organizations this summer for their outstanding contributions to our ectodermal dysplasias community. The awards were given as part of our 45th anniversary celebration at the Family Conference on Thursday, July 23. We honor and thank each of them for their commitment to making life…
How a Trip to Capitol Hill Turned into NFED’s First-Ever Mahjong Fundraiser
Christian is a dental student who first learned about ectodermal dysplasias while advocating on Capitol Hill. He couldn’t believe that affected individuals often don’t get dental care because insurance companies auto-deny them benefits. Determined to help, Christian enlisted his family’s help to create awareness and raise money in the process. Read how this Pennsylvania family is taking action.
Finding Others With TSPEAR-Related Ectodermal Dysplasia Changed Everything
Anya’s daughter Mia-Rose was diagnosed with TSPEAR-related ectodermal dysplasia in 2023. But, her daughter’s issues seemed different than other children’s on the NFED website. Now, as Mia-Rose loses her first tooth, Anya reflects on finding NFED’s family stories with the same syndrome, feeling less alone, and gaining hope for her daughter’s future smile and newfound confidence.
Halloween Bash 2026
Join the 2026 Halloween Bash, hosted by the Geismar family! Mark your calendars for October 20–31, 2026 and join us for our spooktacular 26th Anniversary Halloween Bash! This celebration features an online auction, an in person party in NYC on October 24th, and plenty of frightfully fun ways to make a difference for families affected…
What Does it Feel Like to Overheat When You Can’t Sweat?
Ever wonder what it actually feels like to overheat when you can’t sweat? We asked people in our community to share their experience in their own words. Plus, get the early warning signs every parent should know, especially if your little one can’t tell you they’re too hot yet.
NFED Family Conference Volunteers: 260 Hours of Heart
If you attended the Family Conference in Chesterfield, Missouri, chances are good you encountered a volunteer at every turn. Someone welcomed you warmly as they handed you your attendee bag, someone made sure your dental evaluation happened on time, and someone kept the crayons and water stocked in the hospitality room. Maybe they checked your…
The Smile that Makes Mia Shine
Mia has a big reason to smile! With help from the NFED, she got a denture that changed more than her smile. Her dad, Otis, knows what it’s like to grow up with ectodermal dysplasia and missing teeth. Read Mia’s sweet story and see why this little smile means so much to their family.
The NFED Launches Ectodermal Dysplasias Registry
The NFED is excited to launch the Ectodermal Dysplasias Registry! By joining, you can help researchers and doctors better understand these rare conditions, improve treatments, and shape the future of care. Every story shared adds to our knowledge and brings hope for all families affected by ectodermal dysplasias.