EdeReaLife

X-Linked Hypohidrotic Ectodermal Dysplasia (XLHED) is a rare genetic condition that affects more severely males, mainly causing issues with sweat glands, teeth, and hair. This condition can significantly impact the daily lives of patients and their families.
The aim of this study is to understand how XLHED affects the lives of young male patients and their families over time. By studying the natural course of the disease and its impact, the study could improve the understanding of the challenges faced by these patients and their families.
In this non-interventional study, no treatment is tested. Instead, the researchers observe and collect information about the health and daily experiences of young male patients with XLHED. They do this by gathering information from medical records and asking parents to fill out questionnaires at different points in time.