Leading the World in Research for Ectodermal Dysplasias

The NFED is pioneering innovative research on several fronts to find answers to some of our many unanswered questions. Learn about efforts to establish prevalence rates, to develop treatment protocols for wound healing in the p63 syndromes, to establish best practices for eye treatment protocols for incontinentia pigmenti and more.

Guatemalan Family Fights to Save Their Baby

Eduardo shares his heart wrenching story to find help for his precious daughter, Arantxa. Born with incontinentia pigmenti in a country where doctors are not familiar with the condition, the sweet little girl faces extraordinary challenges. It’s a story of a family fighting against all odds to save their baby and a father sharing his emotional journey.

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.