primary HLH resources for you and your family
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 you probably have many questions.
Don’t hesitate to reach out to your doctor at any point during the primary HLH journey.
HLH=hemophagocytic lymphohistiocytosis.
Here is a list of all available materials.
You can filter the results using the options below, or browse through all of them at once.
Caregiver discussion guide
As your loved one begins their primary HLH journey, this guide can help you understand some basic information about the disease, organize your thoughts and questions, and get the most out of discussions with your loved one’s doctor.
Patient discussion guide
As you begin your primary HLH journey, this guide can help you think about next steps, organize your thoughts and questions, and get the most out of discussions with your doctor.
Family screening guide
This guide can help you understand what a diagnosis of primary HLH may mean for your family.
Primary HLH treatment guide
This guide can help explain how you or your loved one were diagnosed with primary HLH and the types of treatment the doctor may prescribe. It also provides questions for you to ask when talking with your doctor.
Hematologist/oncologist
A brief guide to the role of the hematologist/oncologist in the primary HLH journey.
Social worker
A brief guide to the role of the social worker in the primary HLH journey.
Rheumatologist
A brief guide to the role of the rheumatologist in the primary HLH journey.
Hepatologist/gastroenterologist
A brief guide to the role of the hepatologist/gastroenterologist in the primary HLH journey.
Infectious disease specialist
A brief guide to the role of the infectious disease specialist in the primary HLH journey.
Critical care specialist
A brief guide to the role of the critical care specialist in the primary HLH journey.
Transplant overview
Learn more about the bone marrow transplant procedure and what to expect.
Going home guide for caregivers
This guide will help you prepare for your loved one’s transition from the hospital to home after their treatment.
Going home guide for patients
This guide will help you prepare to transition from the hospital to your home after treatment.
Primary HLH support groups brochure
Learn about organizations that can provide you with helpful information, emotional support, financial assistance, and other resources.