Support & Resources:
Whether you need to reach out for emotional support, learn about ways to pay for treatment, or simply gather information about primary HLH, we’re here for you. We hope you find the following resources helpful.
We aim to help guide you and your family along the treatment journey. We offer a wide range of resources and support to help provide the best possible care.
Call us any time for assistance 833.597.6530
Throughout your journey, our team of specialists is available to provide guidance and help answer your questions about things like:
Your dedicated Care Manager will provide personalized support to navigate the process and help with all of the details.
Find out if you or your child is eligible for financial support programs, including our Patient Assistance Program and commercial Co-pay program.
Coverage for Gamifant can vary based on your insurance plan. Call us any time with questions about what your plan may cover.
Our team of professionals can help you better understand the disease and how Gamifant may help during your treatment journey.
Get more information about dedicated Care Managers, insurance benefits, financial assistance, product education, and more.
This guide can help you understand what a diagnosis of primary HLH may mean for your family.
Talk to your doctor to learn more about transplant. You can also find some additional information about transplant on the following sites.
BMT InfoNet is an organization for bone marrow, stem cell, and cord blood transplant patients. It empowers patients and caregivers with knowledge through its website, video learning library, patient books, and symposiums. BMT InfoNet also provides personal guidance and a one-on-one peer support program.
Over the past 30 years, Be The Match®, operated by the National Marrow Donor Program® (NMDP), has managed the largest and most diverse marrow registry in the world. Their team works every day to save lives through transplant.
The following organizations, many of which were founded by families affected by HLH, offer a wide range of resources. Visit their websites to learn about various support groups, financial assistance, charity events, and much more.
DISCLAIMER: All organizations listed are third parties over whom Sobi has no control and are provided solely as a service. Sobi has no responsibility for the content provided by these third parties.
The mission of The Matthew and Andrew Akin Foundation is to inform, inspire, and invest in families affected by hemophagocytic lymphohistiocytosis.
Liam’s Lighthouse Foundation (LLF) is a nonprofit, tax exempt organization established to increase awareness of HLH and other histiocytic disorders. The organization focuses on bringing the families affected together, offering support through a variety of programs, and raising much-needed funds for continued research and education at leading medical institutions.
Founded by the mother of an HLH survivor, the goal of this program is to support and connect others struggling with the disease. In addition to hosting an active Facebook support group, HLH Support holds events like the Marsh Family Annual Toy Drive to raise money for HLH.
Hannah, the HLH survivor who inspired the program, also sells handmade blue Swarovski crystal bracelets to spread awareness and fund HLH research.
Histiocytosis Association provides educational materials, peer/physician networking opportunities, and a physician directory for treatment/second opinions. The organization also offers staff to assist families with awareness, advocacy, and programs to raise funds for research.
Founded in 1980, the Immune Deficiency Foundation (IDF) is a national nonprofit patient organization dedicated to improving the diagnosis, treatment, and quality of life of persons with primary immunodeficiency (PI) diseases through advocacy, education, and research. IDF provides accurate and timely information and valuable resources for patients and families living with PI, including HLH.
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