An adult hyperinsulinism patient’s reflections

Anna Nicolaou shares her HI experience

The following has been shared by Anna Nicolaou: Within the medical world, there’s positive progress being made on a daily basis for a variety of things such as research and new forms of medicine. However, when it comes to correct diagnosis and transition from a pediatric health care team to an adult health care team, the … Read more

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Rare Across America 2025

Rare Across America 2025

Ben Raskin-Gross and Julie Raskin participated in Rare Across America initiative sponsored by the EveryLife Foundation. This initiative empowers advocates to meet with the staff of members of Congress at their local district offices. Ben and Julie shared their personal stories and advocated for issues of great importance for the congenital hyperinsulinism and broader rare … Read more

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Tracking Hope: Our HI to Diabetes Journey, CGM, and the Power of Sharing Through HIGR

basketball player with HI

(The following is shared by HI parent Felicia Huffman:) When my daughter, Jilani Rose, was diagnosed with congenital hyperinsulinism (HI) as a baby, our world changed overnight. She underwent a 98% pancreatectomy — a lifesaving procedure that came with a lifelong consequence: the development of insulin-dependent diabetes. We’ve come to view this transition through both … Read more

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Copenhagen 2025

CHI Copenhagen Conference group photo

Last Wednesday I returned from an unforgettable jam-packed 8 days in Copenhagen. I was there for 3 reasons: 1) To provide subject insight for the shooting of a documentary film about hyperinsulinism; 2) To co-create the CHI Family Conference in Copenhagen with Henrik Christesen and his incredible team at Odense University/Hans Christian Anderson Children’s Hospital, … 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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