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…
Failure to Thrive and Ectodermal Dysplasias
Growth abnormalities are common in children with ectodermal dysplasias. In this article, learn what it means when a child is diagnosed as Failure to Thrive or FTT. Dr. Kathleen J. Motil defines the condition and explains what it means for any child as well as those with ectodermal dysplasias. How common is it? Does it…
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…
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: 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…
Gastroesophageal Reflux
Children with certain types of ectodermal dysplasias, especially hypohidrotic ectodermal dysplasia, can experience gastroesophageal reflux. This article explains what it is, what causes it and how to treat it.