Clouston syndrome

Healthcare/Doctors

How do I find a center of excellence in Clouston Syndrome?

Unfortunately, as of 2019, there is no center of excellence for Clouston syndrome. One resource for people who want to find out more about treatment for Clouston syndrome is The National Foundation for Ectodermal Dysplasias.

References
  • The National Foundation for Ectodermal Dysplasias: www.nfed.org
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What specialist doctors should I see if I have Clouston syndrome?

If someone has Clouston Syndrome, what should their primary care provider know about managing their disease?

What specialist doctors should I see if I have Clouston syndrome?

In order to receive the best medical care, people with Clouston syndrome should see the following medical specialists:

  1. Dermatologist (skin doctor)
  2. Medical geneticist and genetic counselor (genetics professionals)

Genetic counselors in the United States can be found on the National Society of Genetic Counselors website. Genetic counselors in Canada can be found at the Canadian Association of Genetic Counselors website.

If someone has Clouston Syndrome, what should their primary care provider know about managing their disease?

If someone has Clouston syndrome, their primary care provider should do a thorough exam of their nails, hair, and skin. The primary care provider might refer the person to a dermatologist (skin doctor) and medical geneticist.

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