Boys affected by incontinentia pigmenti typically do not survive pregnancy. The condition is an X-linked dominant “lethal” condition. Meet Jamistyn, a 6-year-old boy with IP who not only survived but is thriving! Read more about his extremely rare story!
Here are five easy ways for you to take action this month to help get the Ensuring Lasting Smiles Act passed.
Don’t miss the chance to be a part of the NFED’s largest fundraiser. And it’s all online!
Two genetic counseling students gained a valuable education when they volunteered to help families with ectodermal dysplasias. Their work was a win-win for the NFED and for them.
A nonprofit dedicated to one type of ectodermal dysplasia has closed its doors. We are honored to have worked with its founder to transfer their information and welcome their families. Explore our new, expanded section on incontinentia pigmenti.
Since 1981, our mission has focused on families affected by ectodermal dysplasias. We are proud of the extraordinary accomplishments we have achieved in our nearly four decades. 2019 was no exception. Read to see the impact we made for our NFED family.
Prosthodontist Dr. Karen McAndrew is helping patients with ectodermal dysplasia get the treatment they need over their lifetime.
Seeing a friend’s teeth, 3-year-old Kannon decides he’ll ask Santa for the teeth he hasn’t developed. Dr. Karen McAndrew steps in to make his first denture and his wish come true.