We know that you have been good this year so we wrote our own letter to Santa on behalf of you and all families affected by ectodermal dysplasias.
By Karina Luna I am the proud parent of a child with hypohidrotic ectodermal dysplasia. When my son, Liam, 4, was first diagnosed, I was completely blindsided. His father, Leonardo, and I had never heard of this rare condition, nor did we know how unique his upbringing would be because of it. Upon finding the…
The National Foundation for Ectodermal Dysplasias (NFED) has had a breakthrough year from launching Advocacy Day to funding research projects that are on the brink of life-changing treatments and cures. We cannot do this without our donors and volunteers. Thanks to all of you who give your hard-earned money and time to the NFED! The…
Dr. Jon Korostoff is an unsung hero of the National Foundation for Ectodermal Dysplasias (NFED) family. His humble approach to dental care can be misleading because he is truly changing the lives of his ectodermal dysplasias patients.
Helping the NFED as a volunteer can add a Presidential Service Award to your resume or college application. We have numerous ways that you could help as a volunteer. Learn how. We offer several toolkits which make volunteering easy.
We simply could not put a price tag on the value the volunteer doctors add to our Scientific Advisory Council (SAC) and our organization. We rely on their talents to lead our research program, present educational workshops at Family Conferences, write educational materials and talk with families one-on-one. They bring incredible expertise to our mission. We are honored to have added three new physicians to the SAC.
Educating medical professionals about ectodermal dysplasia is an important part of our NFED mission. Families played a critical role by volunteering to share their stories and describe the how the rare condition affects them at a Grand Rounds in Fairfax, Va.
Amazing! Wonderful! Informative! Fantastic! Life-Changing! Educational Empowering! Fun! Fascinating! What word best describes our week in Washington D.C.? They all do! For me, it is hard to really describe the impact that week made on our entire community.