Posts Tagged ‘Histiocytosis’
From Greece, with Research: 39th Annual Histiocyte Society Meeting
Every year, the Histiocyte Society, a partner organization of ours, meets in a new location to share research and celebrate the achievements many researchers have made throughout the year in…
Read MoreGlobal 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 MoreRare Disease Advisory Panel – PCORI Fall Meetings
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…
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 MoreHistio and MSK – Involved and Supportive
As a patient advocacy organization, the Histiocytosis Association is no stranger to working closely with hospitals or medical organizations within the US and around the world. In fact, we work…
Read MoreHome run and a Hole in One for a Cure
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…
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…
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