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…
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…
Things to Know When Your Child Needs Dentures
Children affected by ectodermal dysplasias are often missing teeth, a condition called hypodontia. To restore their dentition, the dentist may recommend they get dentures. The NFED recommends that children get dentures when they are young, as early as age 2. Parents, this process may be new to you. You may have more questions than answers….
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…
Dental Providers Insurance Tool Kit
Dental care is a medical necessity for those affected by ectodermal dysplasias, but most health insurance claims related to this care are automatically denied. We encourage individuals and families as well as dental providers to download our Dental Providers Insurance Tool Kit as a way to navigate this tricky situation. FOR DENTAL PROVIDERS Help patients…
Tooth Party Kit
Is your child getting a new set of dentures? Help them celebrate by throwing a Tooth Party! This Tooth Party Kit will help you make it a fun event for your child. It’s a great way to encourage them to wear their dentures. It includes materials for activities coloring pages bookmarks certificates and more! Start…
Insurance Tool Kit
A Step-by-Step Guide to Get Medical Benefits for Dental Care of Ectodermal Dysplasias Families affected by ectodermal dysplasias encounter a wide range of challenges as they strive to meet their needs and that of their children. They face troublesome problems such as treatment issues, school concerns and dealing with insurance companies. Ectodermal dysplasias are a diverse…