Executive Director Letters

Advocacy: The Small Rock in a Big Ocean

August 25, 2022
Advocacy Warrior throwing a rock to create a big wave

Histiocytic disorders make up about six of the 7,000 rare diseases that exist today. When a condition is rare, it is unlikely that there will be federal funding to support…

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Advocacy Groups: A Powerful Network of Support

August 11, 2022
Location of Advocacy Groups

We speak to patients and families every day; brave, strong, resilient individuals who share their histio journey. The families and physicians we connect with are from all around the world…

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Industry Update from the World Orphan Drug Congress

July 25, 2022
Industry update from the World Orphan Drug Congress 2022

On July 11-13, I attended the World Orphan Drug Congress in Boston, Massachusetts. This congress has taken place for several years now and brings together people from all cross-sections of…

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Battle of the Warrior Ambassadors

July 8, 2022

We do not always understand why we face immense challenges in life. These challenges take many shapes and sizes from not receiving that acceptance letter, to losing a loved one,…

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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
research

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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