Searching for Ectodermal Dysplasia Support information? Find all needed info by using official links provided below.
What are ectodermal dysplasias? The ectodermal dysplasias are inherited disorders that involve defects in the hair, nails, sweat glands and teeth. When a person has at least two types of abnormal ectodermal features—for example, malformed teeth and extremely sparse hair—the individual is identified as being affected by ectodermal dysplasia.
https://www.nfed.org/about-us/contact-us/
Thank you for your interest in the ectodermal dysplasias! You can also call us at 618-566-2020. We love to talk to people in our community one-on-one to provide information and support. You can also email an NFED staff member directly.
https://www.ucsfbenioffchildrens.org/conditions/ectodermal_dysplasia/
A child with ectodermal dysplasia may encounter social and emotional challenges unique to this condition. Support organizations and resources are available for children and their families.
https://rarediseases.info.nih.gov/diseases/6317/ectodermal-dysplasia
Jul 17, 2017 · Thus, a family affected by an ectodermal dysplasia should consider speaking with a geneticist or a genetic counselor for a better understanding of the specific ectodermal dysplasia and the probabilities or risks that the ectodermal dysplasia will occur in any future pregnancy.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6820434/
Sep 30, 2019 · Ectodermal dysplasia (ED) is a rare genetic disease caused by developmental disturbances of embryonic ectoderm derived tissues, organs, and other accessory appendages. The congenital missing of teeth is usually bilateral. Anodontia or hypodontia may be ...Author: Poulomi Bhakta, Bhavna Barthunia, Haritma Nigam, Pallavi Pawar
https://rarediseases.info.nih.gov/diseases/76/hypohidrotic-ectodermal-dysplasia
Jan 21, 2014 · A registry supports research by collecting of information about patients that share something in common, such as being diagnosed with Hypohidrotic ectodermal dysplasia. The type of data collected can vary from registry to registry and is based on the goals and purpose of that registry.
https://ghr.nlm.nih.gov/condition/hypohidrotic-ectodermal-dysplasia
Oct 29, 2019 · Most people with hypohidrotic ectodermal dysplasia have a reduced ability to sweat (hypohidrosis) because they have fewer sweat glands than normal or their sweat glands do not function properly. Sweating is a major way that the body controls its temperature; as sweat evaporates from the skin, it cools the body.
The Ectodermal Dysplasia Society is a charity dedicated to improving the health and well-being of people whose lives are affected by Ectodermal Dysplasia (ED). We work together with people who have ED, their families, researchers, health and other professionals to develop and share expertise, increase awareness and understanding, and assist with the day-to-day management of ED.
https://contact.org.uk/advice-and-support/medical-information/conditions/e/ectodermal-dysplasia/
It provides information, advice and support to those affected by an ectodermal dysplasia, promotes the education of medical professionals and general public, supports research, encourages a network for mutual support and produces a newsletter.
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