Free Genetic Counseling and Testing

The XLHED Global GeneScreen Project is a new and improved version of a program you may have heard called Forty-Women Strong. The program offered free genetic testing for XLHED to those who qualified. Today, that program not only has a new name, but has also expanded to reach more people who are affected by XLHED.

XLHED Discussion Guide

Download this handout to guide you through discussions with your spouse or partner, family members, genetic counselor, etc. It includes space for notes, collecting your family history of XLHED, and any questions you want to ask.


Genetic Testing: Facts vs Fiction is a live web event featuring genetic counselor Carrie Milliard. Carrie will touch on the basics of XLHED genetics and inheritance and also help you separate the facts from fiction when it comes to genetic testing. She'll explain why testing is important, what resources are available to you, and how to find out if you qualify for free genetic screening.

Mark Your Calendar!
Genetic Testing:
Facts vs Fiction

November 6, 2013
7:30-8:30 pm est

November 7, 2013
12:00-1:00 pm est

Clinical Trial for Newborns with XLHED

Edimer Pharmaceuticals is developing a new drug for XLHED. It's called EDI200 and it may be the first drug to improve the quality of life for boys with XLHED. Right now, Edimer is looking for women who know or suspect they are carriers for XLHED and who are pregnant or thinking of expanding their families. Baby boys who are born in the next 18 months may be eligible to participate in the study.

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