Support & Resources:

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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.

Gamifant Patient Services

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.

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Call us any time for assistance 833.597.6530

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A dedicated team is here for you

Throughout your journey, our team of specialists is available to provide guidance and help answer your questions about things like:

Starting treatment with Gamifant

Your dedicated Care Manager will provide personalized support to navigate the process and help with all of the details.

Financial assistance when you need it

Find out if you or your child is eligible for financial support programs, including our Patient Assistance Program and commercial Co-pay program.

Clarifying your health insurance options

Coverage for Gamifant can vary based on your insurance plan. Call us any time with questions about what your plan may cover.

Understanding primary HLH

Our team of professionals can help you better understand the disease and how Gamifant may help during your treatment journey.

Download our support services overview

Get more information about dedicated Care Managers, insurance benefits, financial assistance, product education, and more.

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Download our guide to navigating your hospital experience

Learn what to expect while in the hospital for primary HLH treatment.

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Download our family screening guide

This guide can help you understand what a diagnosis of primary HLH may mean for your family.

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Download our caregiver brochure

In addition to the guidance of your doctor, our caregiver brochure could be another helpful resource.

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Download our support program overview

Get more information about dedicated Care Managers, insurance benefits, financial assistance, product education, and more.

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Watch our caregiver educational video

This video helps make sense of the primary HLH diagnosis and its treatment.

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Transplant resources

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

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.

Be 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.

Community support

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.

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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.

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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.

Liam’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.

HLH 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.

Histiocytosis 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.

Immune 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.

Are you looking for more information about primary HLH?

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Important Safety Information

GAMIFANT can cause serious side effects, including:

  • Infections. GAMIFANT is a medicine that affects your immune system and may lower the ability of your immune system to fight infections. GAMIFANT may increase your risk of serious infections that can lead to death. These infections include tuberculosis (TB), histoplasmosis, Herpes zoster infection (shingles) and other infections caused by viruses, fungi or bacteria that can spread throughout the body.

INDICATION

GAMIFANT is a prescription medicine used for the treatment of adults and children (newborn and older) with primary hemophagocytic lymphohistiocytosis (HLH) whose disease has come back or progressed, or other medicines have not worked well enough or cannot be tolerated.

IMPORTANT SAFETY INFORMATION

GAMIFANT can cause serious side effects, including:

  • Infections. GAMIFANT is a medicine that affects your immune system and may lower the ability of your immune system to fight infections. GAMIFANT may increase your risk of serious infections that can lead to death. These infections include tuberculosis (TB), histoplasmosis, herpes zoster infection (shingles), and other infections caused by viruses, fungi, or bacteria that can spread throughout the body. Your healthcare provider will:
    • Test you for TB before you start treatment with GAMIFANT
    • Treat you with a medicine for TB if you are at risk for TB or if you have a known positive TB test. Infections are common in people treated with GAMIFANT
  • Before starting GAMIFANT, tell your healthcare provider all of your medical conditions and if you:
    • Had TB in the past, or if you or a member of your family have been in recent close contact with someone with TB
    • Have had a positive TB skin test (purified protein derivative test)
    • Currently have an infection or have a history of infections, including histoplasmosis or herpes zoster (shingles)
    • Are being treated for an active infection
    • Have symptoms of an infection such as fever; sweat and chills; cough; breathing problems; blood in mucus (phlegm); or warm, red painful skin or sores on your body
    • Are pregnant or plan to become pregnant. It is not known if GAMIFANT can harm your unborn baby
    • Are breastfeeding or plan to breastfeed. It is not known if GAMIFANT passes into your breast milk. Talk to your healthcare provider about the best way to feed your baby during treatment with GAMIFANT
    • Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements
  • Your healthcare provider will give you medicine to help prevent certain infections before you receive GAMIFANT
  • After starting GAMIFANT, tell your healthcare provider if:
    • New symptoms of an infection appear
    • Symptoms of an infection that you already had when starting GAMIFANT worsen. Your healthcare provider will monitor you closely for signs and symptoms of infections during treatment with GAMIFANT

GAMIFANT can cause serious infusion reactions, including:

  • Infusion reactions are common with GAMIFANT and can also be severe. Infusion reactions can happen during or shortly after treatment with GAMIFANT. Your healthcare provider may temporarily stop your infusion and treat your symptoms before continuing your infusion if you have severe infusion reactions. Tell your healthcare provider right away if you get any of the following symptoms:
    • Skin redness
    • Itching
    • Fever
    • Rash
    • Excessive sweating
    • Chills
    • Chest pain
    • Shortness of breath
    • Nausea or vomiting
    • Lightheadedness or dizziness

The most common side effects of GAMIFANT include:

  • High blood pressure (hypertension) and fever. These are not all of the possible side effects of GAMIFANT

You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch, or call 1-800 FDA-1088.

Please see full Prescribing Information for Gamifant.

You may also contact Sobi at medinfo.us@sobi.com or 866-773-5274.

Sobi is 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.

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