Ectodermal dysplasia: A prenatal study for HED affected boys скачать в хорошем качестве

Ectodermal dysplasia: A prenatal study for HED affected boys

Ectodermal dysplasia or X-linked hypohidrotic ectodermal dysplasia is a rare genetic disease which can severely impact the quality of life of affected patients. Professor Holm Schneider, a worldwide expert of the pathology, explains what the disease is and that XLHED complications can be sometimes life-threatening. You will be able to hear testimonies from mothers and fathers of affected children as well as patient associations representatives, who share their vision of this pathology and how it affects them. Pr Schneider mentions that a prenatal clinical study for women who are pregnant with boys affected with ED, Edelife, is underway. This is a worldwide study, with 7 sites open in 6 countries. Study-related information is available on Edelifeclinicaltrial.com where you can also find contact details of patient associations and the study sites doctors if you have any questions.