A little knowledge goes a long way
Check out the following materials for more information about primary HLH and Gamifant. Don't hesitate to reach out to your doctor with any questions.
Gamifant Cares resources and helpful information
Gamifant Cares Consent Form
This form will allow you or your loved one to enroll in Gamifant Cares.
How Gamifant Treatment Is Given Video
Watch this video to learn more about the dosing schedule and administration process for Gamifant.
Mack's Primary HLH Journey
Watch Mack share his personal experience as a teen diagnosed with primary HLH treated with Gamifant.
Organizations that can help
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
Liam's Lighthouse Foundation (LLF) was founded in memory of a 1-year-old boy who lost his life to HLH. The LLF website provides an overview of HLH and links to information about stem cell donations, fundraising, and more.
Eric's Journey Foundation
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
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.
Histiocytosis Association
The Histiocytosis Association provides helpful information to patients and families dealing with primary HLH. It offers podcasts, webinars, videos, and more. The association can also help connect patients with doctors who have experience treating primary HLH.
Immune Deficiency Foundation
The Immune Deficiency Foundation (IDF) works to inform and connect families facing conditions like primary HLH. IDF hosts virtual meetings and offers lots of resources, including educational materials, newsletters, and fundraisers.
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.
National Marrow Donor
Program (NMDP)
Over the past 30 years, NMDP has managed the largest and most diverse marrow registry in the world. Their team works every day to save lives through transplant.
