About the Advocacy Group
Congenital Hyperinsulinism International (CHI) was founded in 2005 by a group of concerned parents of children born with the condition. CHI partners with leading international HI physicians, researchers, and patient advocates to prevent brain damage and death, search for better treatments and improve the quality of life for all HI patients. CHI is the only US based nonprofit working globally to support patients born with the condition.
WEP Clinical was contacted by a patient representative from CHI who was receiving requests from patients who wanted to gain access to an EMA and FDA approved product that was not commercially available in their countries. These patients had no other treatment options available and were at risk of experiencing worsening symptoms which could lead to emergency surgery. The advocacy group wanted to help these patients but did not know how to get the product into countries where it is not registered.