Executive Director Letters
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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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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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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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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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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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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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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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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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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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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