Image
Resources icon

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.

Image
Investigating HLH podcast icon

Investigating HLH Podcast

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.

Image
Episode 1: Introduction to HLH

An Introduction to HLH

Adam Narloch speaks with Dr Michelle Hermiston to discuss the history of HLH and advances that have been made in understanding this rare disease.

Listen
Image
Episode 2: Diagnosing HLH

Diagnosing HLH

Adam Narloch speaks with Dr Ashish Kumar and Dr Scott Canna to discuss the challenges involved with diagnosing and managing HLH.

Listen
Image
Episode 3: Treating HLH

Treating HLH

Dr Saara Kaviany and Dr Blachy J. Dávila Saldaña discuss the overall treatment goals and strategies for patients with HLH.

Listen
Image
Episode 4: Monitoring Treatment Response

Monitoring Treatment Response

Kari Magee speaks with Dr Bethany Verkamp to discuss her recent research on evaluating treatment response to etoposide-based treatment in patients with HLH.

Listen

Downloadable resources

To quickly sort through the available resources, use the filter below.

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.

Download
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.

Download
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.

Download
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.

Download
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.

Download
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.

Download