A four-year-old boy affected by ectodermal dysplasia colored quietly while his parents set his denture on a Senate staffer’s table. Their story shows why the Ensuring Lasting Smiles Act matters. Read how NFED advocates are gaining support in Congress, why momentum is growing, and the simple steps you can take to help.
Wound Healing Conference: When Families, Doctors, and Researchers Team Up for Answers
Meet Lily, a brave seven-year-old who made new friends, colored a stuffed bear, and helped researchers at the NFED’s Wound Healing Conference. Find out how families like hers shaped new treatment guidelines, started a skin sample biobank, and showed what it looks like when science and community join hands.
We’re Hiring: Director of Communications!
Be the One Who Tells Our Stories! Are you a creative communicator with a heart for making a real difference? Do you believe that great storytelling can educate, connect, and inspire a global community? The National Foundation for Ectodermal Dysplasias is looking for a Director of Communications to lead how we share our mission with…
Row in Rhythm: Our Global Ectodermal Dysplasias Community
What happens when 15 nations gather to share their stories of ectodermal dysplasia? In Copenhagen, NFED leadership found family, courage, and a surprising Viking ship lesson in rowing together. Meet the inspiring voices who gathered for the Ectodermal Dysplasias International Network Conference and how we are shaping the global ectodermal dysplasia community. Discover why none of us is ever truly rowing alone!
Meet Our Rising Stars and Outstanding Award Winners
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…