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Primary HLH resources for your patients

The resources on this page were designed to help patients with primary HLH and their caregivers learn more about the disease and what to expect. Primary HLH is not an easy disease to understand, and your patients probably have many questions.

Feel free to download and share these materials at any time to help guide your patients and their caregivers along the treatment journey.

HLH=hemophagocytic lymphohistiocytosis.

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Featured resources

Here is a list of all materials available.

You can filter the results using the options below, or browse all the resources at once.

Caregiver discussion guide

As your patients begin their primary HLH journey, this guide can help their caregivers understand some basic information about the disease, organize their thoughts and questions, and get the most out of discussions with the healthcare team.

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Patient discussion guide

As your patients begin their primary HLH journey, this guide will ease discussions with your patients by helping them to consider next steps and organize their thoughts and questions.

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Family screening guide

This guide helps your patients understand what a diagnosis of primary HLH may mean for their families.

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Primary HLH treatment guide

This guide helps explain your patients’ primary HLH diagnosis and the types of treatment you may prescribe. It also provides questions for them to ask during discussions with you.

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Hematologist/oncologist

A brief guide to the role of the hematologist/oncologist in the primary HLH journey.

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Social worker

A brief guide to the role of the social worker in the primary HLH journey.

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Rheumatologist

A brief guide to the role of the rheumatologist in the primary HLH journey.

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Hepatologist/gastroenterologist

A brief guide to the role of the hepatologist/gastroenterologist in the primary HLH journey.

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Infectious disease specialist

A brief guide to the role of the infectious disease specialist in the primary HLH journey.

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Critical care specialist

A brief guide to the role of the critical care specialist in the primary HLH journey.

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Transplant overview

This guide provides your patients with an overview of what to expect in the hematopoietic stem cell transplantation (HSCT) treatment process.

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Going home guide for caregivers

This guide will help caregivers prepare for their loved ones’ transition from the hospital to home after treatment.

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Going home guide for patients

This guide will help your patients prepare to transition from the hospital to home after treatment.

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Primary HLH support groups brochure

Share this with your patients to help them learn about organizations that can provide helpful information, emotional support, financial assistance, and other resources.

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