Executive Director Letters

Global Growth in Histiocytosis Patient Advocacy and Research

November 16, 2023

Me and a few members of our staff returned from the 39th Annual Histiocyte Society Meeting in Athens, Greece a few weeks ago and now that we’ve unpacked our suitcases…

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Rare Disease Advisory Panel – PCORI Fall Meetings

November 2, 2023
Deanna pictured at PCORI Rare Disease Advisory Panel Meeting

The Patient Centered Outcomes Research Institute (PCORI) is an independent, nonprofit research organization that seeks to empower patients and others with actionable information about their health and healthcare choices. They…

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A Peak Through the Clouds: NORD Breakthrough Summit

October 19, 2023

I was so excited to attend the NORD Breakthrough Summit, where patient advocacy professionals, pharmaceutical companies, biotech, FDA, and other key stakeholders in rare disease come together to learn and…

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Histio Letter Writing Campaign: A Remarkable Success!

October 5, 2023

Welcome back to the blog! After a month off while we took more time to bring awareness to histio, we are back and ready to tell you all about what…

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Access to Therapy Around the World

August 3, 2023

As you know, the Histiocytosis Association has a multifaceted mission and under that umbrella, oversees many different activities all aimed at providing support, resources, and advocacy along every step of…

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Home run and a Hole in One for a Cure

July 20, 2023

Back in June, we had two events that both centered around supporting HLH and both involving sports. The first, ‘Play for a Cure’, is a 25-Year-Old event and the second…

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A Guide to Genetic Testing

June 22, 2023

Recently, we had a webinar on the genetics of HLH, part of which touched on genetic testing to receive a diagnosis or pinpoint a mutation. In histiocytic disorders, genetic testing…

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Histio Ambassadors Champion Advocacy at the World Orphan Drug Congress

June 8, 2023

During the last week of May, the World Orphan Drug Congress (WODC) had its annual meeting in Washington, D.C. Last year, I was able to attend this event for the…

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Ways to Advocate for Rare

May 25, 2023
Ways to Advocate for Rare

Last year I talked to you about Rare Across America with two former participants, Drew Freedman and Leisa Greathouse. Now, we want to invite you to find something in rare…

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A Tale of Three Conferences

May 11, 2023

Here at the Histiocytosis Association we ended April strong and kicked the month of May off with a bang! Between all of us, we have attended three conferences in the…

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