In May I had the honor of representing the NFED at the 6th International Conference on Ectodermal Dysplasias. This conference was held in breathtaking Oslo, Norway on May 27-30. The sessions were both a wonderful opportunity to learn, and a way to network with experts on ectodermal dysplasias from around the world. There were 101 participants…
NFED Class of 2015– We Are So Proud!
We are excited for our 2015 graduates! Every one of you has accomplished great things in your lives and are sure to go on to be even greater. Congratulations Class of 2015! Enoch Carnahan Greenville, South Carolina Graduating from: Greer Middle College Charter High School Five things about me that I would like people to…
Top 10 Reasons to go to Family Conference
10. Be inspired or be inspiring! 9. Have an experience you will never forget, like dancing Gangnam Style on stage with all your friends. 8. Meet the family liaisons and enjoy their opening ceremony antics! 7. Meet the NFED staff in person! 6. Show off your talents during the talent show! 5. Learn new ways to care for…
Many Hands Make the Work Light
If I heard my mom say it once, I heard it at least a thousand times growing up… “many hands make the work light.” It became a family mantra of sorts and instilled in me a lifelong sense of volunteerism. Mom also used to always say, “Although you may have nothing else to give, you…
Together, We Will and Can Make a Difference!
By Julie Claeys When our son, Carver, was diagnosed in 1995 with hypohidrotic ectodermal dysplasia (HED) at just four months old, we found the NFED. I remember talking with Beverly from the foundation and her peaceful, calming voice assured me that they were there for us. It wasn’t long before I found myself selling raffle…
Enter Our Photo Contest!
It’s our first Ectodermal Dysplasias Awareness Month Photo Contest! Read the rules and download your sign today. Be creative and join the fun. It’s a great way to raise awareness.
Something Exciting is Happening at NFED.org
Receiving more than 6,000 visitors every month, we know that NFED.org is a critical, go-to resource for NFED families, professionals, researchers, and individuals affected by ectodermal dysplasias around the world. It is often the first place that new families enter the NFED, desperately looking for information and help. We consider it the NFED front door. …
Richter Receives NFED’s Highest Research Award
Our founder, Mary K. Richter, received a standing ovation as she was named the Kenneth S. Brown, M.D. Research Award recipient for her monumental impact on ectodermal dysplasias research. Timothy Fete, M.D., M.P.H., from the Scientific Advisory Council (SAC), presented the award to Mary Kaye at the Saturday celebration dinner at the Family Conference in…