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Resources for You and Your Patients
Help guide your patients and their caregivers along the treatment journey with these tools and resources.
- Primary HLH treatment
- Financial assistance programs*
- Health insurance options
- Reimbursement
Call 833.597.6530 for assistance
*for eligible patients
Advocacy Groups
Matthew and Andrew Akin Foundation
The mission of The Matthew and Andrew Akin Foundation is to inform, inspire, and invest in families affected by hemophagocytic lymphohistiocytosis.
matthewandandrew.orgHLH Support
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.
hlhsupport.orgHistiocytosis Association
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.
histio.orgLiam’s Lighthouse Foundation
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.
liamslighthousefoundation.orgImmune Deficiency Foundation (IDF)
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.
primaryimmune.orgTransplant Resources
BMT InfoNet
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.
bmtinfonet.orgBe The Match
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.
bethematch.org
A rare dedication
At Sobi, we focus on ultra-rare diseases, which can affect just hundreds or even dozens of patients. These patients have many critical unmet needs yet are frequently overlooked by the healthcare industry.
We are dedicated to providing access to innovative treatments that make a significant difference in the lives of individuals with ultra-rare diseases.
We work closely with patients, caregivers, and advocacy organizations to understand and address the challenges they face throughout their journey, from infancy to adulthood. And we keep innovating to meet their evolving needs, serving as a trusted partner for life.