Executive Director Letters
This week, we are pleased to have team from the INTO-HLH Registry as guests, to speak about the registry, its purpose, and its progress. The INTO-HLH RegistryThe Insight into the…
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We’re about halfway through the year, and although we have a lot more to share with you this year, we wanted to take a quick pit-stop and do a quick…
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The following blog post is adapted from the April University of Alabama at Birmingham (UAB) newsletter for the Histiocytosis Survivorship Study participants. We figured many of you, who haven’t been…
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In March, we focused on Malignant Histiocytosis (MH), to learn more about this rarer form of histio. First, we sat down with Dr. Karen Rech and Dr. Aishu Ravindran to…
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In mid-May, I had the opportunity to once again attend the 32nd Annual Nikolas Symposium hosted by the Kontoyannis family and the Artemis Foundation (Histio Hellas) in Greece. The Nikolas…
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The Patient Centered Outcomes Research Institute (PCORI)’s federally mandated Rare Disease Advisory Panel (RDAP) has been an incredible opportunity. For the last three (3) years I have served on the…
Read More15 years ago, investigators around the world were still searching for effective therapies for histiocytic disorders. We were beginning to learn about the genetic mutations that are present with histio.…
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This Rare Disease Day was the rarest of all. It was on one that fell on a Leap Day. Given this occasion, we went all out for Rare Disease Day…
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On February 1st and 2nd of this year, approximately 70 healthcare providers and patient advocates came together at St. Jude Children’s Hospital to brainstorm solutions to gaps and challenges for…
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Since 1992, because of your generosity and dedication, the Histiocytosis Association has granted over $7.5 million for research projects in 14 countries – that’s 211 projects, 7 clinical trials and…
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