Take action together:
We will change the future of XLHED

The Newborn XLHED Clinical Trial of EDI200 is an important clinical trial that may help change the lives of boys affected by XLHED. More newborns are needed to take part in the clinical trial—see if your family may qualify.

Who may participate?

Newborn boys affected by XLHED may be eligible. Women with a family history of XLHED are encouraged to contact us if they are:

  • Pregnant and may be expecting a baby boy
  • Planning to become pregnant and expand their families in the near future

Connect with family members and friends. Let’s spread the word and make a difference. Get more information about how you can get involved through The XLHED Network.

Genetic counseling for families affected by XLHED

Understanding your family history is important as you plan for the future. Speak with a genetic counselor to learn whether XLHED runs in your family—and what it may mean to your children. A genetic counselor can also help explain genetic testing options available to you.

Find out if you qualify for free genetic counseling through InformedDNA.

Talking about XLHED

Talking openly with your partner or family members about XLHED can start with answering some questions together. For example, you may want to ask about:

  • Your family history of XLHED
  • Genetic testing and how XLHED is passed on in families
  • Having a child (or more children) knowing they could have XLHED
  • The clinical trial for XLHED and the benefits of participating

Check out the XLHED Discussion Guide. It provides helpful information and questions to guide the conversation with your family members, genetic counselor, and doctor.

Join the XLHED Network. Become a member of the community, and stay up to date on the latest research, clinical trials, and a potential treatment being developed.