Parents can get stuck on the “what ifs” in life and if things could have turned out differently. Becky Abbott reminisces about her son, Aidan’s journey with ectodermal dysplasia and her angst and stress. She can’t help but wonder how it all could have been different had the Edelife clinical trial been an option when she was pregnant.
The NFED is funding research to help scientists develop a new way to diagnose XLHED prenatally. Because it’s non-invasive, it would not pose any risks for the pregnant mother. Learn about the procedure and how it would help mothers who are considering the EDELIFE clinical trial.
Maarten and Linus were the first two boys treated before they were born with an investigational medicine for X-linked hypohidrotic ectodermal dysplasia. The boys are now 7 years old. The long-term results are incredibly positive! Read how they and the four other boys who were treated are doing.
Pediatric dermatologists are hard to find. Fortunately, the NFED has had an excellent one on our team in Dr. Elaine Siegfried. Read how about the impact she’s made and why she thinks the NFED is different than other organizations.
The EDELIFE Clinical Trial is investigating a potential treatment for boys affected by x-linked hypohidrotic ectodermal dysplasia (XLHED). Some of you have asked why the clinical trial is focused only on boys and not girls with XLHED. Find out why.
We have great news for XLHED families in the United States. The first site in the U.S. has opened at Washington University in St. Louis for
EDELIFE, the prenatal study for XLHED-affected boys. Learn about the treatment they are studying and how it can potentially impact XLHED symptoms, including the ability to sweat.
For the first time, women who have the gene variant for x-linked hypohidrotic ectodermal dysplasias (XLHED) have another option to consider when they are family planning. They can choose to participate in a clinical trial called EDELIFE where researchers are testing a potential therapy in-utero on male fetuses with the condition! Find out how the condition can be inherited and how you can learn if you are a carrier.
Laura Reiser grew up watching her dad struggle with the heat since he couldn’t sweat due to x-linked hypohidrotic ectodermal dysplasia (XLHED). When she became pregnant with a boy who also had XLHED, she and her husband, Milo, decided to participate in research that would potentially restore their unborn son’s sweat glands. Learn how another NFED mom helped them decide to do it, how baby Bennett is doing and how it’s impacted his “Papa.”