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INTO-HLH Registry

The battle against HLH is difficult, especially when everyone's journey can be very different.  While doctors have made great advancements in learning about HLH and developing treatment options, more information is needed to better understand the outcomes of treatment.  


If you have or have had HLH or have a family member who has it, we urge you to take the time to register. This research is so important to the HLH community.  HLH Heroes Foundation supports the work of the INTO-HLH Registry because we fiercely believe in helping others to have a better opportunity to fight HLH with confidence.  

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INTO-HLH (Insight into the Natural History and Treatment Outcomes of Hemophagocytic Lymphohistiocytosis) is a disease Registry aimed at advancing what is known about HLH. The insights obtained from this Registry will help doctors to better diagnose and manage HLH and improve treatment outcomes for future patients.

INTO-HLH Registry is a collaboration between Cincinnati Children's Hospital Medical Center (CCHMC), Texas Children's Hospital (TCH), and Sobi North America as the industry sponsor.

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