Executive Director Letters

Adding Dollars to Academics: The Histio Student Scholarship Program

March 2, 2023

Since its inception in 2019, the histio scholarship program has supported 11 histio warriors and 3 histio family members in their pursuit of a college degree. This is made possible through…

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Wild Zebras Running Free: Rare Disease Day 2023

February 16, 2023
Wild Zebras Running Free: Rare Disease Day 2023

“Look for horses, not zebras.” That’s what doctors often teach in medical school to those learning how to diagnose illnesses. Looking for the rare disease comes later. First, they are…

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2022 Histiocytosis Association Research Grant Recipients

February 2, 2023
2022 Histiocytosis Association Research Grant Recipients

Our History of Research Funding At the very heart of the Histiocytosis Association is the steadfast commitment to finding a cure for histiocytic disorders. The Histiocytosis Association Research Grant Program…

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A Flyers Histio Night Two Years in the Making

January 19, 2023

Slightly over a year ago, our former Communications Director started our first Histio Night at the Flyers in early 2022. Last week, we had the second annual Histio Night at…

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Behind the Scenes of the Histiocytosis Association in 2023

January 5, 2023

I cannot believe we are already in 2023! Why does it feel like the years fly by the more we experience? In November, we held our HopeCast, where I shared…

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Action in the Face of Grief from Rare Disease (HLH)

December 15, 2022
Action-in-the-Face-of-Grief-from-Rare-Disease- HLH

Maire soothed her to sleep like she always had; she sang The Rainbow Song to her. They sang it together as Lils drifted off to sleep. That was the last time Maire heard her daughter’s voice.

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Breakthrough for Histiocytosis: Cobimetinib Approval by the FDA

December 1, 2022

You may have heard the exciting news, that on November 1st, 2022, Memorial Sloan Kettering Cancer Center (MSK) announced that the U.S. Food and Drug Administration (FDA) approved the oral MEK inhibitor drug cobimetinib (Cotellic®) for the treatment of adult patients diagnosed with histiocytic neoplasms (HN).

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8 Years of International Collaboration from Seed Funding

November 17, 2022

Collaboration noun. – The action of working with someone to produce or create something. A common part of our daily lives, and a critical part of advancing research for histiocytosis…

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Sisterhood and Survival: The Hope of Bone Marrow Registries

November 3, 2022

It’s always a great feeling when we get to bring good news to this blog. There are many challenges that those with histiocytic disorders may face, but there are also…

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Highlights from this year’s meeting of the Histiocyte Society

October 20, 2022
Highlights from this years meeting of the Histiocyte Society

This is part 2 of our series recapping the events of the 38th Annual Histiocyte Society meeting. Click here for part 1. Every 3 years there is a passing of…

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