If you or someone you love lives with an ectodermal dysplasia, chances are you have already turned to AI for answers. Get insights from experts and learn how to navigate the opportunities and risks of using AI in your ectodermal dysplasias health journey. In this 45-minute webinar recording, you will:
A Guide to the First Year of Life: Goltz Syndrome / Focal Dermal Hypoplasia
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…
Webinar: Edelife Clinical Trial for XLHED
Want to learn exciting updates on the Edelife Clinical Trial, a potential prenatal treatment for boys affected by x-linked hypohidrotic ectodermal dysplasia (XLHED)? Download our library resource to watch this 45 minute webinar.
Sweat Test Options in Ectodermal Dysplasias
In some types of ectodermal dysplasia, the inability to sweat (hypohidrosis or anhidrosis) can lead to serious health risks like overheating. Several investigational and clinical sweat tests may help determine if sweat glands are present and functioning. In this article, you will learn about several types of sweat test options in ectodermal dysplasias. In-office methods…
Ectodermal Dysplasias and Fingerprints
Dr. Rylee Moody explains what adermatoglyphia is and how it leads to partial or complete lack of fingerprints. It’s a condition where someone has the absence of skin ridges and furrows. It can also appear on other parts of the body. There are two subtypes of adermatoglyphia: isolated congenital adermatoglyphia and adermatoglyphia-associated syndromes. Many types…
Feeding Solid Food to Children Without Teeth
Many children affected by ectodermal dysplasias may develop few if any teeth. Others may have teeth that erupt late. These issues can make it challenging for a child to transition from breast milk or formula to solid foods. In this article, Dr. Kathleen J. Motil, a professor in Pediatrics-Gastroenterology, Hepatology, & Nutrition at Baylor College…
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…
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….