Lurie Children's launches genetics and rare diseases division behind $11M gift

CHICAGO - Ann & Robert H. Lurie Children’s Hospital of Chicago has received an $11 million gift to establish the Edwards Family Division of Genetics and Rare Diseases.

The donation, from Don and Anne Edwards, will expand pediatric genetics services, speed up diagnostic testing and increase access to clinical trials for children with rare and genetic disorders.

Hospital leaders said the investment will reduce the lengthy wait time families face when seeking answers for rare diseases.

What they're saying:

Don and Anne Edwards, who serve on hospital boards and are parents, said their donation is rooted in a belief that children with genetic disorders deserve access to both diagnosis and treatment.

"Anne and I are incredibly proud to support this effort at Lurie. For a child to live life with illness, uncertainty and little hope is simply unacceptable. We believe Lurie Children’s is going to be the place that makes a difference for patients with genetic disorders—the place that can both figure out a diagnosis and actually have a therapy to treat rare disease," Don Edwards said in a statement.

According to the hospital, more than 25 million Americans live with rare conditions, yet over 40 percent remain undiagnosed, and 95 percent have no available treatments.

Led by Dr. Carlos Prada, the new division will build the largest pediatric genetics training program in the state, shorten diagnostic testing wait times from months to weeks, and triple the number of gene therapy trials by 2030.