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About Us

Our Story

While HLH is not a cancer, but rather an immune disorder with similar treatments to cancer, receiving an HLH diagnosis changes everything.  Because HLH is rare, it is difficult to find others who have walked the same path, leaving many patients and caregivers feeling alone as they navigate the medical world, endure harsh treatments, spend months separated from family, and in some cases move temporarily or even permanently to be closer to the hospital providing treatment.  Because HLH is rare, there is less opportunity for financial assistance for caregivers who are forced to leave their jobs to care for their loved one.    Because HLH is rare, it can be difficult to know what the treatment journey will look like or if the doctors know how to treat it.  It's because of these hardships that a group of primary HLH caregivers banded together in 2021 to form the HLH Heroes Foundation, looking to honor their warriors by building a greater community of support.

Our Heroes

These are some of the brave HLH warriors who motivate and inspire our organization every day.


"Be strong, be fearless, be beautiful. And believe that anything is possible when you have the right people there to support you."

Our Mission

Our Mission

The HLH Heroes Foundation is dedicated to providing support to individuals and families impacted by HLH.

Happy Family
Fists in Solidarity

Our Vision

No one fights alone!

We envision a community that envelops anyone facing an HLH diagnosis with love and support.

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