Resources
Use the links below to access reliable information curated by experts. We hope that these resources will help inform you throughout various stages of your journey.
What is HLH?
Cincinnati Children’s Hospital, HLH Center of Excellence
Types of HLH, symptoms, diagnosing HLH, treatments
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A kid-friendly video to help explain HLH to young children
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Learn about HLH, genetic testing, treatment and research
opportunities, registries
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Understand primary HLH and the way it is treated. Get information about Gamifant, a prescription medication used for the treatment of primary HLH as well as an opportunity to access support during treatment.
What do I need to know about HLH treatment?
Due to the rarity of HLH, it’s important to seek treatment from
a hospital with specialists who are familiar with HLH. Many of
these specialists work in pediatric hospitals but can often consult
for adult patients.
Physician Finder
Search for a physician who specializes in HLH nearest you,
using the Histiocytosis Association’s physician finder:
Use this list of questions compiled by members of HLH Heroes Foundation to help you navigate conversations with your care team.
Use this resource created by the Histiocytosis Association to search for available clinical trials for the treatment of both primary and secondary HLH in children and adults.
What do I need to know about Bone Marrow Transplant?
The National Marrow Donor Program (formerly Be the Match), is an amazing resource for those facing a bone marrow transplant. The links below offer basic information about bone marrow donation as well as additional resources for patients and caregivers.
This resource will you to find a transplant center near you.
How can I help advance HLH research?
Join this 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. HLH angels and survivors are invited to join the registry.
Other Helpful Resources
The Histiocytosis Association runs a variety of virtual peer support groups for individuals and families impacted by histiocytic disorders, including HLH.
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Scholarship Opportunities
There are a variety of scholarship opportunities for HLH warriors. Check out the links below for more specific eligibility and criteria information:
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Scholarship Program- Histiocytosis Association
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#RAREis Scholarship Fund
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Patient Advocate Foundation
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The Valerie Fund (only for children treated at specific New Jersey Hospitals)
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