On May 3, over 540 people rode their bikes in and around Philadelphia to raise money for rare disease research. In the process, the group of dedicated rare disease advocates raised over $1.4 million. Congenital Hyperinsulinism International (CHI) was one of 15 teams to participate in the race and the “Raring to Go for CHI” … Read more
For those who were newly diagnosed this year and their families, Congenital Hyperinsulinism (HI) began with a major crisis. There was the terrible moment when something was found to be wrong, followed by a diagnostic process, the search for physicians and nurses who understood the condition, the hunt for an effective medication, and sometimes surgery, … Read more
Congenital Hyperinsulinism International (CHI) held the Fifth Congenital Hyperinsulinism Family Conference at the NH Milano 2 Hotel in Segrate, Italy just outside of Milan on September 17 and 18, 2013. It was an intensive two days of presentations on many aspects of congenital hyperinsulinism, from the experience of living with the condition, to the latest … Read more
The first interim report on the NORD Research Grant to Dr. Diva DeLeon of the Children’s Hospital of Philadelphia for her work on exendin (9-39) has been submitted. NORD has graciously permitted us to share the public portion of this interim report. This groundbreaking research is funded by the Mario Batali Foundation. Dr. Deleon receives … Read more
Parents who have children with congenital hyperinsulinism (HI) and adults living with the condition continue to wish there were more HI treatment options. While treatment does exist in most cases, it is far from ideal. With the goal of introducing a more effective treatment for patients who are not responsive to diazoxide, researchers at the Children’s … Read more