Congenital Hyperinsulinism International (CHI) will be working with a documentary film crew to produce a short film on living with congenital hyperinsulinism. The purpose of the film is to increase awareness of the condition. The film will be part of our public awareness campaign. This is a casting call for the film! We are looking … Read more
We are thrilled to share with you all a bit about our new Development Director, Pamela Weber-Leaf! Continue reading to learn about Pamela’s unique work experiences and get a glimpse into her life. Welcome to the team, Pamela! I’m so excited to have joined CHI! Becoming the organization’s Development Director allows me to weave the … Read more
I began working with CHI in August 2024, and from the very start, I kept hearing about the plans for a family conference in Liverpool, UK. Having only attended academic conferences, I had no idea what to expect from a family conference. As the months flew by, agendas were being sent around, registration numbers were … Read more
I attended the National Organization for Rare Disorders Breakthrough Summit in Washington DC last week. The focus of this year’s Summit was “Equitable Access to Innovation.” It was fantastic to spend time learning from and connecting with people linked by a shared passion to make the world better for the millions of people living with … Read more
Can personal stories drive change in newborn screening practices? “It’s appalling that the fate of a newborn is in the hands of a postpartum mother who doesn’t understand the signs her newborn is giving her, that he’s not getting the sugar he needs … It shouldn’t be on her to save his brain.” That is … Read more