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…
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…
The Best Kind of Medicine: Inside NFED’s 45th Anniversary Family Conference
What happens when hundreds of people who truly understand life with ectodermal dysplasias come together? Hope grows. Friendships begin. Lives change. From happy tears and inspiring stories to exciting research and unforgettable moments, see why the 2026 NFED Family Conference reminded everyone that no one walks this journey alone.
Look Back at Our 2025 Impact Report
Together. That word has defined the National Foundation for Ectodermal Dysplasias (NFED) since its founding. As we reflect on 2025, it’s the one that best captures what we accomplished this past year. Our 2025 Impact Report is officially here! Look back at a year of more support, research, advocacy, and community for people with ectodermal…
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!
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!