This NFED guide is written for parents who are expecting a child or have a newborn affected by Goltz syndrome (also known as focal dermal hypoplasia). This comprehensive guide gives parents and caregivers with both medical information and practical advice. It reassures you that while Goltz syndrome can present challenges, many children go on to…
A Guide to the First Year of Life: Hypohidrotic Ectodermal Dysplasia
This guide is a comprehensive resource to help parents care for their baby affected by hypohidrotic ectodermal dysplasia (HED). HED is a rare condition defined by the inability to sweat, missing teeth and sparse hair. But, it can also affect many other body parts. A new diagnosis may be overwhelming as you learn about the…
Tips for Incontinentia Pigmenti Eyes
Incontinentia pigmenti (IP) is a type of ectodermal dysplasia that can significantly affect the eyes. This article provides information to help you better understand the terminology and best practices for treating the eyes. It’s written by Lacy Light, a mother of a child with IP and an ophthalmologist, Richard A. Lewis, M.D. Learn what examinations…
Webinar: Learn How New XLHED Clinical Trial Could Affect Future Generations of Your Family
The NFED’s decades-long effort to develop a potential treatment for x-linked hypohidrotic ectodermal dysplasia (XLHED) is coming closer to fruition. Carline Durand and Agnes Jaulent, PhD from espeRare share the latest information (as of October 14, 2020) on the development of the protein ER-004 as a treatment for x-linked hypohidrotic ectodermal dysplasia (XLHED). In this…
Webinar: Ectodermal Dysplasias 101 – Learn About Different Types and How They Can Affect Your Body
Presenter: Timothy J. Fete, M.D., M.P.H., Retired, University of Missouri Duration: 67 minutes With 100+ different types of ectodermal dysplasias, understanding them all can be overwhelming! In this webinar, Dr. Tim Fete gives a comprehensive overview of the conditions to help you better understand what ectodermal dysplasias are, some of the most common types and…
Webinar: Find Answers to Your Most Pressing Health Concerns
This is a recording of a webinar that took place on April 8, 2020. The NFED polled families to ask what questions they had. Drs. Butcher and Fete present information about common health concerns both children and adults who have ectodermal dysplasia experience. You will learn: Signs and symptoms of ectodermal dysplasias The importance of…
Webinar: Eye Concerns Related to the Ectodermal Dysplasias
We hosted this webinar in 2011. The ophthalmologist from our Scientific Advisory Council, Richard A. Lewis, M.D., M.S., explains how ectodermal dysplasias can affect the eyes and suggest possible treatments. Dr. Lewis is Professor in the Departments of Molecular and Human Genetics, Ophthalmology, Medicine, and Pediatrics at Baylor College of Medicine in Houston, Texas. He has…
Prose Lenses
This video documents Marc Steingesser’s PROSE Lens fitting and training experience. He created it to help inform our NFED family with EEC syndrome and other forms of ectodermal dysplasias that affect the eye, about an option for protecting (and possibly assist with healing) the corneas and improving vision.