World Experts Collaborate to Advance Ectodermal Dysplasias Research

For four days in October, 80 experts from around the world came together to chart a course for the future of ectodermal dysplasias and rare disease research. The ultimate goal was: “Translating Discovery to Therapy”. Find out how the International Ectodermal Dysplasias Research Conference will impact diagnosis and therapy development.

My Son With Incontinentia Pigmenti

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!

Welcome Incontinentia Pigmenti Families!

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.

Families Educate Medical Professionals

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.