An alliance of individuals and organizations working together to prevent Jewish Genetic Diseases through education, awareness and screening

“Jewish” Genetic Diseases and non-Jewish carriers

Non-Jews Hit by ‘Jewish’ Diseases Fall Through the Cracks of Genetic Screening
Researchers Push for More Universal Testing

By Gabrielle Birkner
The Jewish Daily Forward 
August 11, 2013

For three days in April, about 70 families whose lives have been upended by Tay-Sachs disease gathered in San Diego for the annual National Tay-Sachs and Allied Diseases conference. The event — which attracted families caring for children with Tay-Sachs, as well as those who have lost loved ones to the degenerative disease that claims most of its victims by age 4 — included forums on symptom management and new research frontiers. There were also support group sessions and a candle-lighting ceremony honoring those who had died.

Tay-Sachs is probably the best known “Jewish” disease. As many as one in 25 Ashkenazi Jews is a carrier of the defective recessive gene. Yet, among the conference attendees, who came from as far away as Poland and Guatemala, only a handful were Jewish. “When I speak with newly diagnosed families, they often say, ‘But we’re not Jewish,’” said Kimberly Kubilus, NTSAD’s director of family services. read more