Posts Tagged ‘HLH’
Histio 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 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 MoreEpisode 025 – The 2022 HopeCast and Year End Update
On episode 25 of the Beyond the Diagnosis Podcast Kathy shares a replay of our HopeCast, originally broadcast on Giving Tuesday. Learn all about the accomplishments of 2022 and what’s…
Read MoreAction in the Face of Grief from Rare Disease (HLH)
Maire soothed her to sleep like she always had; she sang The Rainbow Song to her. They sang it together as Lils drifted off to sleep. That was the last time Maire heard her daughter’s voice.
Read MoreSisterhood and Survival: The Hope of Bone Marrow Registries
It’s always a great feeling when we get to bring good news to this blog. There are many challenges that those with histiocytic disorders may face, but there are also…
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