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…
Sparse and Brittle Hair Care Guide
Hair is one of the primary ectodermal structures affected by ectodermal dysplasias. Symptoms can vary greatly but sparse hair is common. In this article, Rylee Moody, MD Candidate and Elaine C. Siegfried, M.D., provide information and practical tips for how to care for your hair if it’s sparse or brittle. 12 Tips to Help Prevent…
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…
Webinar: Skin, Hair and Nails in the Ectodermal Dysplasias
Learn about four of the five major symptoms of ectodermal dysplasias in this webinar with pediatric dermatologist, Dr. Alanna Bree. She presents in-depth information about how the sweat glands, skin, hair and nails can be affected and ways to manage or treat them. You will learn: About the Expert Alanna F. Bree, M.D. is a…
Webinar: 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…
Webinar: Skin Concerns – The Big Three: Skin, Hair and Nails
Watch this one-hour webinar we hosted with pediatric dermatologist Alanna Bree, M.D. She addresses the changes in skin, hair, nails that are typical in people affected by ectodermal dysplasias. These changes can have a significant impact on those affected by them. They can also help clinicians diagnosis what type of ectodermal dysplasia a patient is…