Welcome to the XLHED Network

The online community dedicated specifically to XLHED.

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Help spread the word

Let's tell others about the clinical trial

The Newborn XLHED Clinical Trial of EDI200 is an important clinical trial and more people are needed to take part. Do you know a family who may qualify?

Who may participate?

Newborn boys who are affected by XLHED are eligible to participate in the clinical trial. Dosing begins soon after birth, so families need to be prepared before the baby is born. Contact us if you are a woman with a family history of XLHED and you are:

  • Pregnant and may be expecting a boy, or
  • Planning to become pregnant and expand your family in the near future
Spread the word

Make the call

Speak with a member of our team to learn more

Get answers to your questions about the Newborn XLHED Clinical Trial of EDI200 and what you may expect if you decide to participate.


Ramsey Johnson, MSM
By phone: +1 617-758-4300
By e-mail: ramsey@edimerpharma.com

Or, send us your contact information and a member of our team will reach out to you.


XLHED (X-linked hypohidrotic ectodermal dysplasia) is a rare genetic disorder. It affects boys in the family, though girls may carry the XLHED gene. Some health concerns include:

  • Hair, teeth, and sweat glands will not fully develop
  • Early health problems that may endanger babies, such as risk of overheating due to the inability to sweat
  • A greater chance of respiratory tract infections and skin problems
  • Emotional stress and social pressures children who are affected by XLHED may experience due to differences
  • Currently, no treatment exists—and lifelong care is needed to manage symptoms
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Genetics & You

Genes tell our bodies how to grow, develop, and function. For some people, certain changes can happen in the body’s genetic information. These changes can result in the body growing, developing, and functioning differently than it should. Symptoms of HED or XLHED may result from these changes. Understanding the genetics of HED and XLHED is important to help:

  • Manage healthcare needs
  • Understand research and treatment options
  • Learn how HED or XLHED may be passed on in your family

Genetics can be complicated, but you’re not alone. To find a genetic counselor near you visit: www.nsgc.org

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Get Connected

Finding a community of people living through similar experiences that you are can have a tremendous impact on living with XLHED.

Ectodermal dysplasia advocacy groups can connect you to other families living with XLHED, provide valuable resources, and keep you up-to-date with ongoing research.

There are many ectodermal dysplasia groups around the world!

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