Executive Director Letters

Nolan: Ninja & HLH Warrior

January 27, 2022

In this post, a guest blogger and mother to Nolan, shares her family’s story of their journey with Hemophagocytic lymphohistiocytosis (HLH). We cannot thank the family enough for the courage…

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Clinical Trials: A Deeper Dive

November 16, 2021

An in depth look at Clinical Trials with Be The Match Medical advancements take time and research. There are several types of studies and trials that are conducted during the…

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A Discussion on Genetic Testing and Histiocytosis

October 13, 2021

When diagnosed with a rare disease, there are so many questions that need to be answered. One important aspect of the work of the Histiocytosis Association is to help provide resources and information when you…

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Connecting with the Community

August 5, 2021

For many years, histiocytosis was thought to only or primarily affect children. Over the years, more adults have been diagnosed with histiocytic disorders which has changed how the Histiocytosis Association…

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Heartfelt Histio Update

July 1, 2021

June marked the close of our Scholarship Program application window, and the start of the application window for the Histiocytosis Association Research Program. In my time on the Board of…

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May 2021

May 30, 2021
mountain view

I hit the road in early May, the wind in my hair as I drove my Mini Cooper down the highway, westbound and headed out for our first in-person events…

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April 2021

April 17, 2021

Our fundraising events are incredibly special.  While they do seek to bring together the community to raise funds for research and other important programs the Association runs, the emphasis at…

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March 2021

March 17, 2021
Everyday Life Foundation Community Congress logo

One of the ways we can propel progress is through advocacy. It seems impossible, to be able to sit with legislatures and policy makers, and to drive forward new processes and…

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February 2021

February 17, 2021

The National Organization for Rare Disorders (NORD) is an incredible group of individuals, dedicated to support the needs of patients, families, and organizations impacted by rare diseases and conditions. Last year, we…

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January 2021

January 15, 2021
Happy New Year

What can I say…? Last year was filled with challenges, and while as a rare disease community and organization we are familiar with challenge, last year proved difficult for us all.  Looking back on 2020, I am…

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