CHI has a new YouTube music video. Singer songwriter Janna Pelle performs her original song, “Down and Up” with children who attended the Congenital Hyperinsulinism Family Conference at Cook Children’s in Fort Worth, TX last spring. The video is lots of fun and a great way for kids to introduce congenital hyperinsulinism to friends and … Read more
52 Heroic doctors, brilliant researchers, courageous parents, and a brave adult with HI spent two days in Lisbon, Portugal from February 28-March 2 working intently on making the future better for people with hyperinsulinism. The CHI Collaborative Research Network is a dynamic international collaboration of researchers, clinicians, and expert patient and caregiver advocates working together … 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
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