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…
Fever and Ectodermal Dysplasia
Fever can cause angst and concern for parents of children affected by ectodermal dysplasia. In this article, Dr. Timothy J. Fete and Dr. Clayton Butcher explain in detail what you need to know about fever to help you treat yourself or your child. Generally, fever is good for the body when it is fighting infection….
Webinar: Skin, Hair and Nails in the Ectodermal Dysplasias
Learn about four of the five major symptoms of ectodermal dysplasias in this webinar with pediatric dermatologist, Dr. Alanna Bree. She presents in-depth information about how the sweat glands, skin, hair and nails can be affected and ways to manage or treat them. You will learn: about the importance of loving the skin you are…
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…
Sweat Glands and Ectodermal Dysplasias
The outermost layer of germ cells (called “ectoderm”), give rise to skin, hair, nails, teeth, and sweat glands. Ectodermal dysplasias are characterized by abnormal development of these cells. People with many types of ectodermal dysplasia have diminished sweating due to missing or non-functioning sweat glands. In this library article, you will learn the following: how…
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…
Breast Issues in Ectodermal Dysplasias
Ectodermal dysplasias can affect breast development in both women and men. In this article, you can will learn the following: Why would breasts be involved with ectodermal dysplasias? How often do the breasts develop abnormally with ectodermal dysplasias? What kinds of issues and concerns are there with abnormal breast development? What options are there to…