Spencer S. Eccles Health Sciences Library, University of Utah
Abstract
LHON patients often wish to know if any of their maternal ancestors had vision loss, and would like to inform living maternal relatives about LHON. However, they lack the knowledge of how to conduct a genealogical search, as well as how to communicate this sensitive genetic information. The patient advocacy group LHON Project at UMDF created the LHON Genealogy Project to fill that knowledge gap
