Posts Tagged ‘Rare Disease’
Global Growth in Histiocytosis Patient Advocacy and Research
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…
Read MoreA Peak Through the Clouds: NORD Breakthrough Summit
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…
Read MoreHistio Letter Writing Campaign: A Remarkable Success!
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…
Read MoreA Guide to Genetic Testing
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…
Read MoreWays 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…
Read MoreA Tale of Three Conferences
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…
Read MoreNational Institutes of Health: Partners in the Fight
With histiocytic disorders being rare, awareness to not only the medical community but also the government level of drug development, research, and health is important for the Histiocytosis Association team.…
Read MoreWild Zebras Running Free: Rare Disease Day 2023
“Look for horses, not zebras.” That’s what doctors often teach in medical school to those learning how to diagnose illnesses. Looking for the rare disease comes later. First, they are…
Read More2022 Histiocytosis Association Research Grant Recipients
Our History of Research Funding At the very heart of the Histiocytosis Association is the steadfast commitment to finding a cure for histiocytic disorders. The Histiocytosis Association Research Grant Program…
Read MoreA Flyers Histio Night Two Years in the Making
Slightly over a year ago, our former Communications Director started our first Histio Night at the Flyers in early 2022. Last week, we had the second annual Histio Night at…
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