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…
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…
Webinar: Women’s Health Study
Watch this one-hour webinar that we hosted with Jill Powell, M.D. She presents the findings from a research survey we conducted about how ectodermal dysplasias affect women. She presents data and findings regarding issues such as breast development, infertility, vaginal dryness, and more. Dr. Powell is an obstetrician and gynecologist SLUCare Physicians Group in St….
Webinar: Overview of Genetics
Watch this one-hour webinar we hosted with Dorothy Katherine Grange, M.D. She gives an overview of genetics as they relate to the ectodermal dysplasias. What are genetic conditions? How are they passed down? Is testing available? She answers all of these questions and more to help you understand the complexities of genetics. Dr. Grange is…
How Ectodermal Dysplasias Can Affect Growth
Growth abnormalities are common in children with ectodermal dysplasia. This article explains the various ways growth is impacted and how to address those issues.
Food Allergies and Ectodermal Dysplasias
The prevalence of food allergies in children with ectodermal dysplasia exceeds the occurrence in unaffected children. This article addresses: Etiology Clinical Features Specific Foods Evaluation Differential Diagnosis Treatment
What Does HED Look Like?
Hypohidrotic ectodermal dysplasia (HED) is a rare genetic condition characterized by • a reduced ability to sweat (hypohidrosis) • missing teeth, (hypodontia) and • fine sparse hair (hypotrichosis). This article summarizes symptoms, diagnosis, cause, testing, inheritance.
Female-Specific Issues in Ectodermal Dysplasias
This article summarizes the findings from an NFED survey regarding what symptoms women affected by ectodermal dysplasia experience. It includes sweating, puberty, breast issues, breastfeeding, pubic hair, vaginal issues and infertility.