Pediatric dermatologists are hard to find. Fortunately, the NFED has had an excellent one on our team in Dr. Elaine Siegfried. Read how about the impact she’s made and why she thinks the NFED is different than other organizations.
The NFED is launching a new platform to connect our families with researchers worldwide. Find out how you can share your experience with ectodermal dysplasia by enrolling.
The EDELIFE Clinical Trial is investigating a potential treatment for boys affected by x-linked hypohidrotic ectodermal dysplasia (XLHED). Some of you have asked why the clinical trial is focused only on boys and not girls with XLHED. Find out why.
In 2021, we convened leaders in the medical and scientific community to envision and outline a research initiative for the next several years for the NFED. Read how scientists, care providers and patient advocates have been working together in four key areas, what they plan to achieve and what it means for the ectodermal dysplasias community.
The 2022 NFED Family Conferece was a great success. Every year, the NFED invites the families it serves to convene at the conference to learn and most importantly, to connect. We laughed, we cried, we danced, and we can’t wait to see you next year!
As we celebrate our 40th anniversary and reflect on the journey to this point, we can say with certainty that no other entity in the world has driven ectodermal dysplasias research more than the National Foundation for Ectodermal Dysplasias (NFED). It’s been our honor to lead. Yet, the gratitude goes to the families who volunteered for studies, the curious researchers who strived to make a difference, and the donors who funded the vision. Let’s look at four decades of advancing research!
For the first time, women who have the gene variant for x-linked hypohidrotic ectodermal dysplasias (XLHED) have another option to consider when they are family planning. They can choose to participate in a clinical trial called EDELIFE where researchers are testing a potential therapy in-utero on male fetuses with the condition! Find out how the condition can be inherited and how you can learn if you are a carrier.
Our conversation with NFED founder Mary Kaye Richter and her son, Charley Richter, continues as we look back at the NFED in the 1980s. They share what it took for the Foundation to grow and thrive and the people that made it happen. Read how Richter’s can-do spirit drove the NFED’s success and inspired parents to expect great things for their children.