Tai visits the Massachusetts State House

Tai from CHI at Massachusetts State House

As a global organization, our staff at Congenital Hyperinsulinism International (CHI) have opportunities to assist patients and doctors in faraway places. Every so often there is a nearby opportunity, allowing our staff to engage face-to-face within their home state. There is a special connection in getting to answer to the needs of the rare disease … Read more

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Julie’s Rare Disease Day

Rare Disease Day 2024

This is the 13th year I have celebrated Rare Disease Day, but it never gets old. Each year brings a yearning for advancements in access to existing treatments and the development and availability of new treatments and cures for all living with rare diseases. As the rare disease community shares every year, taken together, rare … Read more

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Natural History Repeats Itself

Natural History Repeats Itself: My journey promoting and participating in natural history studies When I first heard the words “natural history study,” the only thing that came to mind was the Museum of Natural History – and I had no idea if the two “natural histories” were related in any way. Now, I understand why … Read more

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Circling Back to Riding: This Time for a Cause

Guest blog post by Julie Krcmaric In mid-March, I received a message from a high school friend. We had lost touch over the years but recently reconnected when both our children were diagnosed with rare disorders, throwing us both into the unknown. Her message read that the Liberty Science Center was hosting a free Rare … Read more

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The 20th Anniversary of the Hyperins Yahoo Group

Today is a special day in the annals of congenital hyperinsulinism (HI) families. It is the 20th anniversary of the very first message sent to members of the Hyperins Yahoo Group. This group provided a method of efficient communication via email for families living with HI. On June 4, 1999, Jim Nestor, the moderator of … Read more

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