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…
Breastfeeding Guide for Women Affected by Hypohidrotic Ectodermal Dysplasia
Women who have hypohidrotic ectodermal dysplasia (HED) or who are carriers of x-linked hypohidrotic ectodermal dysplasia (XLHED) can face challenges when they begin breastfeeding such as trouble producing milk. We recommend that you make a breastfeeding plan with your doctor or alactation specialist. Use this article to learn about how XLHED affects the breast and…
Hypohidrotic Ectodermal Dysplasia and Breastfeeding: A Resource for Care Providers
This article is written for health care providers and lactation specialists to help them understand the unique breastfeeding challenges a woman affected by hypohidrotic ectodermal dysplasia (HED) may experience. Because the effects of HED are not well known, care providers might assume the breastfeeding challenges a mom encounters are because the mom is or is…
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: How to Treat Nasal Rocks, Ear Wax and Other ENT Issues
This is a recording of a webinar that took place on June 20, 2020. Dr. Brandon Hopkins addresses numerous topics as to how ectodermal dysplasias can affect the ears and hearing; the nose (airway and sinonasal); oral cavity and throat. You will learn: how ectodermal dysplasias can affect the ears, including the structure, ear infections…
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: How to File Your Ectodermal Dysplasia Insurance Claims Like a Pro
This is a recording of a webinar that took place on February 12, 2020. Families affected by ectodermal dysplasias in the United States have faced problems for decades in getting their health insurance to pay for the dental care they need. Too often, their claims are rejected because the care is deemed “cosmetic.” Or, families…
Family Liaison Directory
We have created a support network of Family Liaisons to give you the opportunity to talk to others who have experience living with ectodermal dysplasias, and to share your feelings with others who understand. Family Liaisons are volunteers who are affected by ectodermal dysplasia or who are the parent of an affected child. Family Liaisons…