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…
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…