Our Halloween Bash online auction is now open! Bid for Good!

Small Steps, Amazing Climbs

Even the tallest mountains can be scaled with enough small but purposeful steps Forever Forward. But not without decades of careful study, testing, steps forward, steps back, and the love and devotion of parents, families and you! Learn how you can help us with our campaign to advance research.

ELSA’s Great Day in the House

The Ensuring Lasting Smiles Act hit another milestone in our journey to get it made into law. And, we are celebrating! Find out what happened and what’s next.

Treating Hypodontia in Children

Hypodontia is one of the typical symptoms of ectodermal dysplasias. It means that one or more teeth are congenitally missing and may be small. For many affected individuals, it’s common to have just a few teeth. At the National Foundation for Ectodermal Dysplasias, we have always advocated that children – and adults – with ectodermal…

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.