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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When it isn’t Hyperinsulinism

One of the missions of Congenital Hyperinsulinism International is to be there for all who journey through the diagnostic odyssey, often leading them to a diagnosis of congenital hyperinsulinism. Sometimes, along the way, hypoglycemia continues to be present, but it is not clear the cause is hyperinsulinism. Danielle’s story is one such story and we … Read more

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Rare Disease Day in the Garden State

New Jersey is often referred to as the “Medicine Cabinet of the World” because many of the leading global pharmaceutical companies are headquartered in New Jersey. Yesterday, New Jersey was also a world hub for rare disease patient advocacy. On a sparkling spring-like day, we gathered at the New Jersey State Museum in Trenton for … Read more

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