Did you know?

  1. The first descriptions of clinical cases that might correspond to what we would now classify as ectodermal dysplasias date from 1792.

  2. Charles Darwin also cited cases of ectodermal dysplasia in a book he published in 1875.

  3. In 1929, Dr. A. A. Weech was the first to coin the term “ectodermal dysplasia” in the medical literature.
  1. The condition is defined by abnormalities in two or more of the following: hair, teeth, nails, skin and sweat glands.
  1. Ectodermal dysplasias can also affect parts of the eye, ear or other organs and body features which develop from the ectoderm.

  2. There are more than 50 different syndromes.

  3. Only 26 of the 50+ syndromes are represented by families who are on the NFED’s database.

  1. 34% of the people the NFED is in touch with have only been diagnosed as having “ectodermal dysplasia” and do not know which specific syndrome affects them.
  1. The conditions affect both men and women and all races.

  2. An estimated 1 in 10,000 births results in an ectodermal dysplasia.

  3. Symptoms can range from mild to severe.

  4. The ectodermal dysplasias can be passed from mom to son, mom to daughter, dad to son, dad to daughter. How it is inherited depends on what ectodermal dysplasia syndrome the family has.

  5. The ectodermal dysplasia might be new in a child and neither parent has the gene for it.

  6. Scientists are testing a potential treatment for the most common type, XLHED, in babies right now in a clinical trial.


  1. 1
    Neil on February 29, 2024

    Thank you for compiling these interesting facts. A quick yet educational read.

  2. 2
    Jeannette Malburg on February 29, 2024

    I was born in 1972 with ectodermal dysplasia. I’m missing most of my front teeth. My fingernails are very brittle. I was very sickly when I was younger. I’ve had ovarian cancer twice.

    1. 3
      Kelley Atchison on March 4, 2024

      Thank you for sharing some of your journey with the ectodermal dysplasia community. Please reach out to our team at info@nfed.org, if we can assist you.

    2. 4
      Kelleigh Kearns on April 13, 2024

      So interesting. I’ve spent my entire life unable to face the world confidently. I have 12 congenital missing teeth, licrosontia, oligadontia and now end stage tmj. I had thyroid cancer x1 and 6 differnt autimmune disorders. Born on1977 I wish with all my soul these sites and groups existed in a way we could connect like internet. I know my life may have been so much more joyful and lesss painful… xo

  3. 5
    Anabella Giordano on April 9, 2024

    Soy pediatra de Argentina y tengo una familia con Sindrome de Clouston.
    Su organizacion es internacional?
    Puedo contactarlos?

    1. 6
      Kelley Atchison on April 9, 2024

      The NFED is an international organization. Our staff is happy to assist you and your patient. Please contact our office at info@nfed.org.

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