PATIENT RESOURCES

Resources to Support You and Your Patients Every Step of the Way

The resources below are here to help you support your patients and their families living with Thyroid Eye Disease (TED). If your patient has TED, these resources can assist in managing your patient’s day-to-day challenges. If you are a patient, you can learn more from these important tools, or by visiting the Amgen By Your Side TEPEZZA® (teprotumumab-trbw) page for patients.

Read Transcript

Shannon, CNE: My name is Shannon, I’m a CGD nurse educator with Horizon Pharma.

CGD nurse educators are wonderful at going out and helping newly diagnosed families figure out what’s going on in their life.

We can answer questions. We can review lifestyle modifications…We can help…with…injection training. We can really help make ACTIMMUNE…a part of their life.

We’re all in it to keep the patient healthy. That’s our number one goal is to make sure that they are educated in what’s going on with their disease and to keep them as healthy as they can be.

Enrolling in the CGD Nurse Educator Program comes with no cost. It’s free for anyone who’s eligible. Initially they’ll get a call from myself or one of the other…nurse educators, introducing ourselves and really just explaining the process ahead.

They’ll then get a call to help them with their insurance side of things and actually getting their medication. And then once their medication arrives, the nurse educator will set up a visit…and really get into education about their…disease.

We can take as much time as the family needs, to answer questions, bring up resources, show them videos. Whatever it takes to really make them feel comfortable.

We’ll do an initial visit to get people going on their medication, but we come back for a variety of reasons.

There’s times when parents are leaving on vacation, and now there’s a grandparent stepping in to do injections. Or a young person’s going off to college, and they need to really just sit down and talk about taking control of their own lifestyle. Ordering their own medications. Making those decisions for themselves.

We’re really here to help in any way we can. And I’d rather have people call, even if they think it’s a small issue. A CGD nurse educator is always just a phone call away.

Additional Patient Resources

TEPEZZA Patient Advocacy Organizations for Those Living With Thyroid Eye Disease (TED)

  • Graves’ Disease & Thyroid Foundation

    The Graves’ Disease & Thyroid Foundation is a helpful resource for patients and caregivers. They provide ongoing conferences geared toward those who have been impacted by Graves’ disease and TED.

    gdatf.org

  • Prevent Blindness

    Prevent Blindness is an organization that has a mission to preserve sight.

    PreventBlindness.org

  • American Thyroid Association

    The American Thyroid Association is dedicated to transforming thyroid care through clinical excellence, education, scientific discovery, and advocacy in a collaborative community.

    Thyroid.org

  • American Autoimmune Related Diseases Association (AARDA)

    AARDA helps autoimmune disease patients all over the world by connecting them to resources and information.

    AARDA.org

  • oneGRAVESvoice

    A resource made possible through an unrestricted grant to the Graves’ Disease and Thyroid Foundation to connect, educate, and empower the Graves’ disease and TED communities.

    oneGRAVESvoice.org

TEPEZZA Patient Advocacy Organizations for Those Living With a Rare Disease

  • Global Genes

    Global Genes is a non-profit, advocacy organization for patients and families fighting rare and genetic diseases. Its mission is to eliminate the challenges of rare disease.

    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 policy.

    EveryLifeFoundation.org

  • American Foundation for the Blind (AFB)

    Expanding possibilities for those experiencing vision loss to create a world of no limits.

    afb.org

  • Bromberg & Associates

    Offering translation and telephonic interpretation for Spanish-speaking individuals and families impacted by TED.

    BrombergTranslations.com

  • National Federation of the Blind (NFB)

    Teaching alternative techniques that blind and low-vision people use to work, care for their homes and families, and engage in recreational activities.

    nfb.org

  • Combat Blindness International

    Providing sustainable, equitable solutions for sight through partnerships and innovation.

    combatblindness.org

  • Center for Chronic Illness

    A supportive web-based peer support group for those living with thyroid eye disease (TED).

    thecenterforchronicillness.org

  • Southeastern Guide Dogs

    Providing service dogs and skilled companion dogs for people with vision loss, those in need of emotional support and/or companionship.

    guidedogs.org

IMPORTANT SAFETY INFORMATION

WARNINGS AND PRECAUTIONS

Infusion Reactions: TEPEZZA may cause infusion reactions. Infusion reactions have been reported in approximately 4% of patients treated with TEPEZZA. Reported infusion reactions have usually been mild or moderate in severity. Signs and symptoms may include transient increases in blood pressure, feeling hot, tachycardia, dyspnea, headache, and muscular pain. Infusion reactions may occur during an infusion or within 1.5 hours after an infusion. In patients who experience an infusion reaction, consideration should be given to premedicating with an antihistamine, antipyretic, or corticosteroid and/or administering all subsequent infusions at a slower infusion rate.

Preexisting Inflammatory Bowel Disease: TEPEZZA may cause an exacerbation of preexisting inflammatory bowel disease (IBD). Monitor patients with IBD for flare of disease. If IBD exacerbation is suspected, consider discontinuation of TEPEZZA.

Hyperglycemia: Increased blood glucose or hyperglycemia may occur in patients treated with TEPEZZA. In clinical trials, 10% of patients (two-thirds of whom had preexisting diabetes or impaired glucose tolerance) experienced hyperglycemia. Hyperglycemic events should be controlled with medications for glycemic control, if necessary. Assess patients for elevated blood glucose and symptoms of hyperglycemia prior to infusion and continue to monitor while on treatment with TEPEZZA. Ensure patients with hyperglycemia or preexisting diabetes are under appropriate glycemic control before and while receiving TEPEZZA.

Hearing Impairment Including Hearing Loss: TEPEZZA may cause severe hearing impairment including hearing loss, which in some cases may be permanent. Assess patients’ hearing before, during, and after treatment with TEPEZZA and consider the benefit-risk of treatment with patients.

ADVERSE REACTIONS

The most common adverse reactions (incidence ≥5% and greater than placebo) are muscle spasm, nausea, alopecia, diarrhea, fatigue, hyperglycemia, hearing impairment, dysgeusia, headache, dry skin, weight decreased, nail disorders, and menstrual disorders.

Please see Full Prescribing Information or visit TEPEZZAhcp.com for more information.

INDICATION

TEPEZZA is indicated for the treatment of Thyroid Eye Disease regardless of Thyroid Eye Disease activity or duration.

IMPORTANT SAFETY INFORMATION

WARNINGS AND PRECAUTIONS

Infusion Reactions: TEPEZZA may cause infusion reactions. Infusion reactions have been reported in approximately 4% of patients treated with TEPEZZA. Reported infusion reactions have usually been mild or moderate in severity. Signs and symptoms may include transient increases in blood pressure, feeling hot, tachycardia, dyspnea, headache, and muscular pain. Infusion reactions may occur during an infusion or within 1.5 hours after an infusion. In patients who experience an infusion reaction, consideration should be given to premedicating with an antihistamine, antipyretic, or corticosteroid and/or administering all subsequent infusions at a slower infusion rate.

Preexisting Inflammatory Bowel Disease: TEPEZZA may cause an exacerbation of preexisting inflammatory bowel disease (IBD). Monitor patients with IBD for flare of disease. If IBD exacerbation is suspected, consider discontinuation of TEPEZZA.

Hyperglycemia: Increased blood glucose or hyperglycemia may occur in patients treated with TEPEZZA. In clinical trials, 10% of patients (two-thirds of whom had preexisting diabetes or impaired glucose tolerance) experienced hyperglycemia. Hyperglycemic events should be controlled with medications for glycemic control, if necessary. Assess patients for elevated blood glucose and symptoms of hyperglycemia prior to infusion and continue to monitor while on treatment with TEPEZZA. Ensure patients with hyperglycemia or preexisting diabetes are under appropriate glycemic control before and while receiving TEPEZZA.

Hearing Impairment Including Hearing Loss: TEPEZZA may cause severe hearing impairment including hearing loss, which in some cases may be permanent. Assess patients’ hearing before, during, and after treatment with TEPEZZA and consider the benefit-risk of treatment with patients.

ADVERSE REACTIONS

The most common adverse reactions (incidence ≥5% and greater than placebo) are muscle spasm, nausea, alopecia, diarrhea, fatigue, hyperglycemia, hearing impairment, dysgeusia, headache, dry skin, weight decreased, nail disorders, and menstrual disorders.

Please see Full Prescribing Information or visit TEPEZZAhcp.com for more information.

INDICATION

TEPEZZA is indicated for the treatment of Thyroid Eye Disease regardless of Thyroid Eye Disease activity or duration.