PEER CONNECTIONS

Amgen By Your Side Goes Above and Beyond to Support You

There are many ways our team can connect you to the people and organizations who can help support you during your treatment experience.

The CGD Mentor Program

Make a 1-on-1 Connection With Another Person Living With Chronic Granulomatous Disease (CGD)

Regardless of where you are on your journey, living with CGD continuously brings new challenges and questions. From disease- and management-related concerns to starting school, going off to college, or setting expectations with a new boss, you can find comfort in knowing others have experience managing life’s transitions and are ready and willing to tell you what they have learned.

With a simple phone call or email, the CGD Mentor Program will connect you with other members of the CGD community who are willing to lend their support and share their personal experiences with you.

To connect with a CGD Mentor, call 1-855-553-8328 between 9 am and 5 pm ET Monday—Friday. A program manager will guide you through the process and set up an introduction.

Community Connections

Connecting You to the Support You Need

Your CNE can help you discover ways to connect with others, if interested (examples include in-person gatherings, online/virtual meetings, and even getting introduced to patient groups and mentors).

Don't miss out on upcoming virtual events

As a community, we can come together and support each other. For patients, caregivers, and those on—and not on—therapy, these events provide a place to connect with people like you.

ACTiON Meetings

Live or virtual events for CGD patients, caregivers, and their families. Participate in presentations from physicians, patients, and more.

Weekend events where you will discuss CGD, lifestyle tips, and more. Help shape educational programs, important initiatives, and the future of the CGD community.

Find support that can help you or a loved one with CGD

Connect with us:

For more information about attending upcoming events, email CGDpartners@amgen.com

Independent Organizations for Those Living With CGD

  • CGD Association of America
    CGD Association of America is an independent, nonprofit organization that is committed to advocating for patients and carriers with CGD.
    cgdaa.org
  • Immune Deficiency Foundation
    The Immune Deficiency Foundation (IDF) is a national nonprofit patient organization dedicated to improving the lives of people with different kinds of primary immunodeficiency diseases, such as CGD. IDF provides a wide variety of resources for people with CGD, including information about diagnosis and treatment options.
    primaryimmune.org
  • Jeffrey Modell Foundation
    The Jeffrey Modell Foundation is a nonprofit organization devoted to diagnosis, meaningful treatments, and cures for primary immunodeficiency diseases. Thirty years after its creation, the organization continues its mission of hope, advocacy, and action by supporting the medical and global patient communities.
    www.info4pi.org
  • Remember the Girls
    The mission of Remember the Girls is to raise awareness of the many issues facing female carriers of X-linked genetic disorders; provide a forum for X-linked females to share their stories, ask questions, provide and receive emotional support; and advocate for increased attention of the medical community to the physical and emotional issues of females who carry X-linked disorders.
    rememberthegirls.org

Independent Organizations for Those Living With a Rare Disease

  • Global Genes
    Global Genes is a leading non-profit organization for patients and families fighting rare and genetic diseases like CGD. Their mission is to provide connections and resources so people can become activists for their disease and feel empowered to keep moving forward.
    globalgenes.org
  • National Organization for Rare Disorders (NORD)
    NORD is a patient advocacy organization dedicated to people with rare diseases and the groups that help them. NORD provides patients and families with advocacy information, assistance programs, and connections to patient organizations.
    rarediseases.org
  • EveryLife Foundation for Rare Diseases
    The EveryLife Foundation for Rare Diseases is dedicated to accelerating biotech innovation for rare disease treatments through science-driven public.
    everylifefoundation.org
  • ANGEL AID
    ANGEL AID connects rare communities to teach the tools of self-care and how to be listened to without judgment.
    angelaidcares.org
  • Our Odyssey
    Our Odyssey’s mission is connecting young adults impacted by a rare or chronic condition with social and emotional support in the hope of improving their quality of life.
    ourodyssey.org
  • Next Step
    Next Step is a non-profit that shatters limitations and elevates aspirations of young people with serious illness during their transition to adulthood through campferences, mentorship, music therapy, and other tailored programming.
    nextstepnet.org

Share Your Story

Important Safety Information

What is ACTIMMUNE® (Interferon gamma-1b) used for?

ACTIMMUNE® is part of a drug regimen used to treat Chronic Granulomatous Disease, or CGD. CGD is a genetic disorder, usually diagnosed in childhood, that affects some cells of the immune system and the body’s ability to fight infections effectively. CGD is often treated (though not cured) with antibiotics, antifungals, and ACTIMMUNE.

ACTIMMUNE is also used to slow the worsening of severe, malignant osteopetrosis (SMO). SMO is a genetic disorder that affects normal bone formation and is usually diagnosed in the first few months after birth.

When should I not take ACTIMMUNE?

Don’t use ACTIMMUNE if you are allergic to interferon-gamma, E. coli-derived products, or any ingredients contained in the product.

What warnings should I know about ACTIMMUNE?

At high doses, ACTIMMUNE can cause (flu-like) symptoms, which may worsen some pre-existing heart conditions.

ACTIMMUNE may cause decreased mental status, walking disturbances, and dizziness, particularly at very high doses. These symptoms are usually reversible within a few days upon dose reduction or discontinuation of therapy.

Bone marrow function may be suppressed with ACTIMMUNE, and decreased production of cells important to the body may occur. This effect, which can be severe, is usually reversible when the drug is discontinued or the dose is reduced.

Taking ACTIMMUNE may cause reversible changes to your liver function, particularly in patients less than 1 year old. Your doctor should monitor your liver function every 3 months, and monthly in children under 1 year.

In rare cases, ACTIMMUNE can cause severe allergic reactions and/or rash. If you experience a serious reaction to ACTIMMUNE, discontinue it immediately and contact your doctor or seek medical help.

What should I tell my healthcare provider?

Be sure to tell your doctor about all the medications you are taking.

Tell your doctor if you:

  • are pregnant or plan to become pregnant or plan to nurse
  • have a cardiac condition such as irregular heartbeat, heart failure, or decreased blood flow to your heart
  • have a history of seizures or other neurologic disorders
  • have, or have had, reduced bone marrow function. Your doctor will monitor these cells with blood tests at the beginning of therapy and at 3-month intervals on ACTIMMUNE therapy

What are the side effects of ACTIMMUNE?

The most common side effects with ACTIMMUNE are “flu-like” symptoms such as fever, headache, chills, muscle pain, or fatigue, which may decrease in severity as treatment continues. Bedtime administration of ACTIMMUNE may help reduce some of these symptoms. Acetaminophen may be helpful in preventing fever and headache.

What other medications might interact with ACTIMMUNE?

Some drugs may interact with ACTIMMUNE to potentially increase the risk of damage to your heart or nervous system, such as certain chemotherapy drugs. Tell your doctor about all other medications you are taking.

Avoid taking ACTIMMUNE at the same time as a vaccination.

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.

The risk information provided here is not comprehensive. To learn more, talk about ACTIMMUNE with your healthcare provider or pharmacist. The FDA-approved product labeling can be found at http://www.ACTIMMUNE.com or 1-866-479-6742.

Important Safety Information

What is ACTIMMUNE® (Interferon gamma-1b) used for?

ACTIMMUNE® is part of a drug regimen used to treat Chronic Granulomatous Disease, or CGD. CGD is a genetic disorder, usually diagnosed in childhood, that affects some cells of the immune system and the body’s ability to fight infections effectively. CGD is often treated (though not cured) with antibiotics, antifungals, and ACTIMMUNE.

ACTIMMUNE is also used to slow the worsening of severe, malignant osteopetrosis (SMO). SMO is a genetic disorder that affects normal bone formation and is usually diagnosed in the first few months after birth.

When should I not take ACTIMMUNE?

Don’t use ACTIMMUNE if you are allergic to interferon-gamma, E. coli-derived products, or any ingredients contained in the product.

What warnings should I know about ACTIMMUNE?

At high doses, ACTIMMUNE can cause (flu-like) symptoms, which may worsen some pre-existing heart conditions.

ACTIMMUNE may cause decreased mental status, walking disturbances, and dizziness, particularly at very high doses. These symptoms are usually reversible within a few days upon dose reduction or discontinuation of therapy.

Bone marrow function may be suppressed with ACTIMMUNE, and decreased production of cells important to the body may occur. This effect, which can be severe, is usually reversible when the drug is discontinued or the dose is reduced.

Taking ACTIMMUNE may cause reversible changes to your liver function, particularly in patients less than 1 year old. Your doctor should monitor your liver function every 3 months, and monthly in children under 1 year.

In rare cases, ACTIMMUNE can cause severe allergic reactions and/or rash. If you experience a serious reaction to ACTIMMUNE, discontinue it immediately and contact your doctor or seek medical help.

What should I tell my healthcare provider?

Be sure to tell your doctor about all the medications you are taking.

Tell your doctor if you:

  • are pregnant or plan to become pregnant or plan to nurse
  • have a cardiac condition such as irregular heartbeat, heart failure, or decreased blood flow to your heart
  • have a history of seizures or other neurologic disorders
  • have, or have had, reduced bone marrow function. Your doctor will monitor these cells with blood tests at the beginning of therapy and at 3-month intervals on ACTIMMUNE therapy

What are the side effects of ACTIMMUNE?

The most common side effects with ACTIMMUNE are “flu-like” symptoms such as fever, headache, chills, muscle pain, or fatigue, which may decrease in severity as treatment continues. Bedtime administration of ACTIMMUNE may help reduce some of these symptoms. Acetaminophen may be helpful in preventing fever and headache.

What other medications might interact with ACTIMMUNE?

Some drugs may interact with ACTIMMUNE to potentially increase the risk of damage to your heart or nervous system, such as certain chemotherapy drugs. Tell your doctor about all other medications you are taking.

Avoid taking ACTIMMUNE at the same time as a vaccination.

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.

The risk information provided here is not comprehensive. To learn more, talk about ACTIMMUNE with your healthcare provider or pharmacist. The FDA-approved product labeling can be found at http://www.ACTIMMUNE.com or 1-866-479-6742.