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Resources about HLH

Access a variety of resources for you and your patients

Here you can find a collection of materials about HLH for healthcare professionals, patients, and their caregivers.

Investigating HLH Podcast
Investigating HLH podcast icon

Listen to Investigating HLH, a podcast series discussing various topics related to HLH. Learn more about the signs and symptoms, the diagnostic challenges, and strategies for managing this rare and fatal disease in your patients.

In each episode, an expert on HLH shares their insights and highlights important considerations for identifying and treating HLH. The fight against HLH is a difficult one, but knowing what to look for could save lives.

Episode 1
Episode 2
Episode 3

Downloadable resources

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Primary HLH and Markers of Disease Progression

This brochure outlines details about HLH with a genetic etiology and includes guidance on the diagnostic process for healthcare professionals.

HLH Disease Mimic: Sepsis

This high-level flash card for healthcare professionals outlines some of the key differences between HLH and sepsis—2 conditions that may present similarly in patients.

Caregiver Discussion Guide

This is a discussion guide for caregivers who may have questions about their child’s HLH diagnosis and the road ahead. It includes a list of questions that they may have about the process, which they can speak with their doctor about for more information.

HLH Advocacy Guide

The Dragon Book is a guide for patients and their caregivers that explains HLH in a way that is child-friendly. It also contains more in-depth information for caregivers who would like to have a deeper understanding of HLH.

Transplant 101

This flash card provides a quick overview of bone marrow transplants to caregivers. It includes an explanation of what they are, when they are needed, and the process involved in preparing and receiving one.

Patient Discussion Guide

The patient discussion guide is a resource for patients and caregivers to track any questions or notes they may have during discussions with their doctors. It includes common questions they may have throughout different stages of their journey.