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
As CHI’s Communications Associate, one of my primary roles is to elevate the patient voice in our hyperinsulinism advocacy work. Working digitally, though, can take me out of the real-life challenges that come along with HI management – I don’t see first-hand the daily inconveniences and anxieties around food, development, and mobility. At our most … 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
The 2015 Congenital Hyperinsulinism (HI) Family Conference took place on September 29th and 30th at the Hospital Sant Joan de Déu in Barcelona, Spain. The Conference was a joint project of Congenital Hyperinsulinism International (CHI) and the Hospital Sant Joan de Déu. Participants gained a comprehensive understanding of HI including the history of basic scientific … 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