Children’s Hospital of Philadelphia Hosts Weekend of Education for Patients and Clinicians

Published on in CHOP News

Hyperinsulinism (HI) Family Conference group photo From Sept. 5-8, more than 200 families and clinicians gathered at Children’s Hospital of Philadelphia (CHOP) for the Hyperinsulinism (HI) Family Conference, presented by CHOP and Congenital Hyperinsulinism International (CHI), along with the Hyperinsulinism Scientific Conference, hosted by the Congenital Hyperinsulinism Center at CHOP.

Congenital hyperinsulinism is a genetic disorder in which the insulin cells of the pancreas, called beta cells, secrete too much insulin. Excess insulin causes low plasma sugar (hypoglycemia). If left untreated, HI can cause brain damage or even death. Congenital HI is a rare disease, affecting 1 in 25,000 to 50,000 babies. Since most children’s hospitals encounter only one or two cases a year, it is important to receive medical care from an experienced treatment center, such as the Congenital HI Center at CHOP.

“At CHOP, we are world leaders in the treatment and manageament of congenital HI,” said Diva D. De León-Crutchlow, MD, Chief of the Division of Endocrinology and Diabetes and Director of the Congenital HI Center at CHOP. “It is our privelage to bring together families and colleagues for one weekend in September to share and disseminate knowledge, all in the name of advancing the care and treatment options for children born with this condition.”

The Scientific Conference featured updates in the diagnosis and management of HI and neonatal hypoglycemia. Over 25 experts spoke to their colleagues from across the globe on important topics, including long-term care of patients with HI. Currently, there are two treatment options: medical therapy and surgical intervention. About 50% of children respond to medical therapy, while the other half require surgery.

The Family Conference brought together the HI Center at CHOP’s team and other world-renowned physicians, researchers, and congenital hyperinsulinism specialists, HI family members, and CHI advocacy leaders who presented at the conference. Families that have children with HI had the opportunity to learn from and interact with leaders in the treatment of HI and meet others who share their experience.

The Congenital HI Center at CHOP was designated a Frontier Program by CHOP in 2019. Frontier Programs are unique, cutting-edge programs that will forge important new discoveries, deliver novel therapies, and help even more children thrive.

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