Julie Raskin New Jersey is often referred to as the “Medicine Cabinet of the World” because many of the leading global pharmaceutical companies are headquartered in New Jersey. Yesterday, New Jersey was also a world hub for rare disease patient advocacy. On a sparkling spring-like day, we gathered at the New Jersey State Museum in Trenton for … Read more
As many of us are planning to gather with family and friends for holiday celebrations, there are families in India who will run out of the lifesaving medicine they need for their children. There is a shortage of Eudemine (diazoxide) in India and no word of when it will end. We have contacted the manufacturer, … Read more
Since 2005, Congenital Hyperinsulinism International has been sharing the patient experience to advance the scientific understanding of congenital hyperinsulinism (HI). We have shared the patient story on our website, at meetings, and on social media with story after story of what it is like to live with the condition. As our focus on awareness has … Read more
Last Saturday was CHI Roller Coaster Day at Luna Park and it was a blast! It was a summery gorgeous day on the shores of the Atlantic Ocean. Luna Park is in Coney Island, Brooklyn right next to the beach, and is home to the historic wooden roller coaster, the Cyclone, built in 1927, as … Read more
The 2018 Congenital Hyperinsulinism Family Conference in Fort Worth, Texas organized by Cook Children’s and Congenital Hyperinsulinism International (CHI) took place over last weekend, July 27-29. 150 people gathered including kids with HI, their siblings, parents, physicians, researchers, and members of the Biotech industry. “Everything I heard this weekend was of benefit and provided me … Read more