Research helps us better understand diseases and can lead to advances in diagnosis and treatment. This section provides resources to help you learn about medical research and ways to get involved.
Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
New NCATS Rare Diseases Research Video
December 27, 2017
Rare Disease Day at NIH on March 1, 2018
December 19, 2017
The following diseases are related to Ectodermal dysplasia. If you have a question about any of these diseases, you can contact GARD.
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Is there any way of repairing or replacing the missing gene in individuals with ectodermal dysplasia? See answer
My husband's sister's son has a form of ectodermal dysplasia (problems with the skin, hair, sweat glands and teeth). No one else in my husband's family is affected. My husband and I don't have children yet. Is it possible that my husband is a carrier or that my future children could have the condition or be carriers? I'm very confused and worried. See answer