We empower and connect those touched by ectodermal dysplasias through education, support and research.
Families affected by ectodermal dysplasias often have trouble paying for necessary dental work that's not covered by insurance companies. Teeth are not cosmetic! We need your help to close a loophole in the law that allows insurance companies to deny necessary medical and dental procedures to those affected by congenital anomalies like ectodermal dysplasias. Our advocacy tool makes it easy to reach out to your legislators and affect change.
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.Learn More
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EDELIFE CLINICAL TRIAL:
Developing The First Potential Treatment for XLHED
Can you imagine if your son born affected by x-linked hypohidrotic ectodermal dysplasia (XLHED) had working sweat glands? Early results from six XLHED-affected boys who received an investigational medicine show they are indeed sweating and have other improved symptoms. Researchers are now studying that first potential treatment for XLHED in a human clinical trial.
Women, we invite you to learn if you are eligible to participate in for the study. Men, help us share information about the trial with women in your family who may be carriers of the gene for XLHED.