Shape the future

Clinical trials

Make the call

Next Event

Shape the future of XLHED

Together, our community can make a difference

With your support, we can work together to change the lives of boys affected by XLHED. Clinical trials are critical to help find and develop new treatments. Every family’s effort counts—especially for rare conditions such as XLHED.

Learn more

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.

Contact:

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.

About XLHED

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

Hope is in sight. Edimer Pharmaceuticals is conducting a clinical trial of EDI200, a new drug that may treat some of the symptoms and improve the quality of life for boys affected by XLHED.

Learn more

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. We’re here to help through genetic counseling and genetic testing services.

Learn more

Shaping the Future

Clinical trials are important in finding out if medical treatments are safe and effective. For XLHED, they play an important role in getting new treatment options to families like yours.

In 2013, Edimer announced the enrollment and completed dosing of the first baby boy in the Newborn XLHED Clinical Trial of EDI200. This is a huge milestone for the XLHED community and a big step towards improving the lives of boys living with XLHED. Since then, more newborn boys have been enrolled in the clinical trial and have received EDI200. The clinical trial is still open and accepting new participants—find out if your family may qualify.

Learn more
THINKING ABOUT
HAVING A BABY?