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These groups were all founded by families affected by HLH. They offer information about the condition and they fundraise for awareness, research, and treatment-related expenses. Visit their websites or use their contact information to get in touch and explore all they have to offer.

DISCLAIMER: All organizations listed are independent third parties or organizations over whom Sobi has no control and are provided solely for your information. Sobi has no responsibility for the content provided by these third parties.

Primary HLH support groups

Liam’s Lighthouse Foundation (LLF) was founded in memory of a 1-year-old boy who lost his life to HLH. His mother launched the foundation to increase awareness of HLH and other similar conditions. LLF hosts charity events to raise funds for research and education at medical centers. The LLF website provides an overview of HLH. It also links to information about stem cell donations, fundraising, and more.

Eric’s Journey Foundation is dedicated to raising awareness about HLH and other histiocytic disorders, and providing support for patients, families, and friends dealing with these diseases.

HLH Heroes Foundation was started in July 2021 by parents of children diagnosed with primary HLH. Their mission is to provide support to individuals and families impacted by HLH, so that their vision can be fulfilled: No One Fights Alone.

The Histiocytosis Association provides helpful information to patients and families dealing with primary HLH. It offers podcasts, webinars, videos, and more to help explain the condition. The association can also help connect patients with doctors who have experience treating primary HLH.

The Immune Deficiency Foundation (IDF) works to inform and connect families facing conditions like primary HLH. IDF hosts virtual meetings for people to share their experiences in a casual setting. The IDF website offers lots of resources, including educational materials and newsletters. It also includes information about starting your own fundraiser or joining a fundraising event.

Transplant resources

Talk to your doctor to learn more about stem cell transplants. You can also find some additional information about transplants on the following sites.

Blood & Marrow Transplant Information Network

This organization’s website provides basic information about stem cell transplants. It includes a video learning library, books for patients, and more. BMT InfoNet also provides a one-on-one peer support program.

Be The Match

Over the past 30 years, Be The Match, operated by the National Marrow Donor Program, has managed the largest and most diverse marrow registry in the world. Their team works every day to save lives through transplant.