Today is a special day in the annals of congenital hyperinsulinism (HI) families. It is the 20th anniversary of the very first message sent to members of the Hyperins Yahoo Group. This group provided a method of efficient communication via email for families living with HI. On June 4, 1999, Jim Nestor, the moderator of … Read more
One of the missions of Congenital Hyperinsulinism International is to be there for all who journey through the diagnostic odyssey, often leading them to a diagnosis of congenital hyperinsulinism. Sometimes, along the way, hypoglycemia continues to be present, but it is not clear the cause is hyperinsulinism. Danielle’s story is one such story and we … Read more
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