Marie-Claire’s Family Conference Reflections

children at a CHI Family Conference

“Did you know that in the old days, they used to remove 98% of the pancreas?!” This quote comes from Dr. Adzick’s imagined future, a world where babies born with Hyperinsulinism (HI) have access to more advanced medications. A world where they no longer endure invasive surgeries or harsh side effects from current therapies. He … Read more

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From Diagnosis to Belonging: An Italian Family’s Journey with Hyperinsulinism

Italian family sharing experience of hyperinsulinism

Read this post in Italian. My name is Martina Sena, and I’m a mother to a beautiful three-year-old girl named Gioia. I’m also an intensive care nurse. You would think my professional background would have prepared me for anything, but nothing could have prepared me for the journey we began when Gioia was just five … Read more

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HI-Stories: Ricky

Ricky's HI-Story

Ricky is an energetic, larger than life 8-year-old who loves Boy Scouts, Minecraft, gaming, building, music, and most importantly, being a big brother to his brother Michael. He is the most empathetic person you will ever meet, constantly trying to help and put a smile on your face, especially when he realizes you could use … Read more

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Today is HI Global Registry Launch Day!

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

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