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…

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: 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…


Tears are a normal body fluid that flow continuously to lubricate the cornea (the clear “watch crystal” covering the front surface of the eye).  The purpose of tears is the lubrication and cleaning of the front surface of the eye, the cornea and the conjunctiva. This article explains tear production, abnormalities and suggested treatments.


Blepharitis is a common and persistent condition that can be managed but seldom eradicated forever. Certain ectodermal dysplasia syndromes can involve blepharitis.   Blepharitis means “inflammation of the eyelid margin”. This article addresses: Types of blepharitis Recommendations for treatment General hygiene Eye medications. Medications taken by mouth Complications of blepharitis Results of treatment