Related Links

Knowledge is power. There are many websites that offer information, support, and resources. On this page find related links for people at risk for chronic iron overload due to blood transfusions (and their loved ones) due to:

Related Links: Sickle Cell Disease

There are many sites on the Internet where you can learn more about sickle cell disease, find support groups, and share stories. For specific answers about your health or the health of a loved one, your healthcare provider is always your best resource.

  • The Sickle Cell Disease Association of America (SCDAA)
    sicklecelldisease.org
    Since 1971, the mission of the SCDAA has been to "promote finding a universal cure for sickle cell disease while improving the quality of life for individuals and families where sickle cell related conditions exist." Their website provides a complete listing of sickle cell education, news, events, resources, and much more.
  • American Sickle Cell Anemia Association (ASCAA)
    www.ascaa.org
    Sponsored by the United Way, the site provides information about ASCAA programs and services, a listing of support groups, and more.
  • Net of Care
    NetofCare.org
    Supports caregivers with information about sickle cell disease and pain management, resources, and tools for finding care centers.
  • Partners Against Pain
    PartnersAgainstPain.com
    Partners Against Pain is an alliance of patients, caregivers, and healthcare professionals working together to alleviate unnecessary suffering. The website has many resources, including recommended books about caring for someone with sickle cell disease.
  • Sickle Cell Advocates for Research and Empowerment
    (SCARE)

    www.defiers.com
    A community-based website by and for people with sickle cell disease, dedicated to the sharing of information and the development of resources and advocacy skills.
  • SickleCellKids.org
    www.sicklecellkids.org
    A fun, educational site for kids. Requires Adobe Flash®.
  • The Sickle Cell Information Center
    www.scinfo.org
    Provides education, news, research updates, and many resources and links.

*The websites listed on this page are maintained by third parties over whom Novartis Pharmaceuticals Corporation has no control. As such, Novartis Pharmaceuticals Corporation makes no representation as to the accuracy, completeness, adequacy, or any other aspect of the information contained on such sites.

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Related Links: Myelodysplastic Syndrome

There are many sites on the Internet where you can learn more about myelodysplastic syndrome (MDS), find support groups, and share stories. For specific answers about your health or the health of a loved one, your healthcare provider is always your best resource.

There are several sites that provide information about MDS and blood cancers.

  • Aplastic Anemia & MDS International Foundation, Inc. (AAMDS)
    aamds.org
    The AAMDS is the oldest and largest patient advocate and support organization for bone marrow diseases. Their website provides many educational and support resources, including "Ask the Experts" (find it under the "Disease Information" tab).
  • The Leukemia and Lymphoma Society (LLS)
    leukemia.org/hm_lls
    Dedicated to fighting blood cancers, the LLS provides many resources for patients and healthcare professionals, including news, discussion boards, disease information, and more.
  • The Myelodysplastic Syndromes Foundation
    mds-foundation.org
    The MDS Foundation is an international organization devoted to the prevention, treatment, and study of myelodysplastic syndromes. Under the "Patient Information" tab you can find informative and useful articles.
  • National Cancer Institute (NCI)
    cancernet.nci.nih.gov/
    The NCI is the U.S. government's cancer clinical planning and outreach organization, under the National Institute of Health (NIH). For expert-reviewed information about MDS, do a search on the term "myelodysplastic syndrome".
  • National Marrow Donor Program (NMDP)
    marrow.org
    The NMDP has the largest listing of volunteer donors in the world, and aims to help connect patients, doctors, donors, and researchers throughout the world. Their website provides comprehensive resources and education.

There are also sites where you can find information about ongoing clinical trials. Your oncologist can tell you what kind of clinical trial may be appropriate. The following sites offer searchable clinical trial information.

  • Aplastic Anemia & MDS International Foundation, Inc. (AAMDS)
    aamds.org
    Find MDS clinical trials in the "Patient Clinical Trials" tab.
  • The Leukemia and Lymphoma Society (LLS)
    leukemia.org/hm_lls
    Select "Treatment and Clinical Trials" from the navigation to find an easy search tool for clinical trials, plus many more resources.
  • The Myelodysplastic Syndromes Foundation
    mds-foundation.org
    Notices of new studies are often found on the home page.
  • National Cancer Institute (NCI)
    cancernet.nci.nih.gov/
    By selecting the "Clinical Trials" tab, you can search for supportive care and treatment clinical trials in your area.
  • National Marrow Donor Program (NMDP)
    marrow.org
    To find clinical trials information, do a search on "clinical trials".

You can find stories written by people with myelodysplastic syndrome on these sites:

  • Aplastic Anemia & MDS International Foundation, Inc. (AAMDS)
    aamds.org
    Find MDS stories of inspiration in the "Support and Hope" tab.
  • The Myelodysplastic Syndromes Foundation
    mds-foundation.org
    On the right side of the page, click on "So you have MDS. What now?", an inspiring and informative article written by a physician who has MDS.
  • National Marrow Donor Program (NMDP)
    marrow.org
    Find "Patient Stories" in the "Patient Resources" section.

*The websites listed on this page are maintained by third parties over whom Novartis Pharmaceuticals Corporation has no control. As such, Novartis Pharmaceuticals Corporation makes no representation as to the accuracy, completeness, adequacy, or any other aspect of the information contained on such sites.

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Related Links: Thalassemia and Other Rare Anemias

There are many sites on the Internet where you can learn more about iron overload, find support groups, and share stories. For specific answers about your health or the health of a loved one, your healthcare provider is always your best resource.

There are several sites that provide information about thalassemia, aplastic anemia, Diamond-Blackfan syndrome, and other anemias in which chronic iron overload due to blood transfusions may be a concern.

  • Aplastic Anemia & MDS International Foundation, Inc. (AAMDS)
    aamds.org
    The AAMDS is the oldest and largest patient advocate and support organization for bone marrow diseases. Their website provides many educational and support resources, including "Ask the Experts" (find it under the "Disease Information" tab).
  • eMedicine.com
    This website provides detailed, expert-reviewed medical information in well-organized articles. To learn more about a specific type of anemia, use the search function.
  • Cooley's Anemia Foundation (CAF)
    cooleysanemia.org
    The CAF is dedicated to providing information for patients and their families, healthcare providers, and anyone who is interested in learning about thalassemia. Their website provides education, news, conference and advocacy information, and more.
  • Diamond Blackfan Anemia Foundation, Inc. (DBAF)
    dbafoundation.org
    The DBAF is a non-profit fund-raising organization founded by parents of children with Diamond-Blackfan anemia. To find links to family resources, select the "Families" tab.
  • National Marrow Donor Program (NMDP)
    marrow.org
    The NMDP has the largest listing of volunteer donors in the world, and aims to help connect patients, doctors, donors, and researchers throughout the world. Their website provides comprehensive resources and education.

There are also sites where you can find information about ongoing clinical trials. Your oncologist can tell you what kind of clinical trial may be appropriate. The following sites offer searchable clinical trial information.

  • Aplastic Anemia & MDS International Foundation, Inc. (AAMDS)
    aamds.org
    Find clinical trials in the "Patient Clinical Trials" tab.
  • National Institutes of Health (NIH)
    clinicaltrials.gov
    This service of the NIH provides regularly updated information about clinical trials, including locations and phone numbers to learn more.

*The websites listed on this page are maintained by third parties over whom Novartis Pharmaceuticals Corporation has no control. As such, Novartis Pharmaceuticals Corporation makes no representation as to the accuracy, completeness, adequacy, or any other aspect of the information contained on such sites.

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EXJADE is indicated for the treatment of chronic iron overload due to blood transfusions (transfusional hemosiderosis) in patients 2 years and older.

Further studies are being performed to determine the long-term benefits and risks of EXJADE.

Important safety information about EXJADE

People who are allergic to EXJADE or any ingredient of EXJADE should not take EXJADE.

Before you start EXJADE, your doctor will give you blood tests, because EXJADE may affect your kidneys, liver, or blood. The blood tests will be performed every month to check your kidney and liver function, your serum ferritin levels, and your blood count. If you are at increased risk of complications because you have a pre-existing kidney condition, are elderly, have multiple medical conditions, or are taking medicine that affects your kidneys, your doctor will give you a blood test every week for the first month you are taking EXJADE or if your dose has changed, and then every month after that. Your doctor may also collect urine samples monthly.

Some patients developed severe kidney problems, in some cases fatal, while on EXJADE. Most of the fatalities occurred in patients who were very ill because of their disease. There may be increased risk of complications for patients who already have a kidney condition, are elderly, have multiple medical conditions, or take medicine that affects kidney function.

Some patients developed severe liver problems, in some cases fatal, while on EXJADE. Many of these patients were greater than 55 years of age and/or had multiple medical conditions already affecting their liver.

Some patients developed blood disorders, in some cases fatal, while on EXJADE therapy, but it is not known whether this was a result of EXJADE therapy or other causes, as most of these patients already had diseases affecting their blood.

Serious allergic reactions (which include swelling of the throat) have been reported in patients taking EXJADE, usually within the first month of treatment. If reactions are severe, stop taking EXJADE and contact your doctor immediately.

You may also receive a hearing or vision test prior to receiving EXJADE and yearly thereafter. Your dose of EXJADE may be changed if needed based on the results of these tests.

Should you develop swelling of the throat, a severe rash, or any hearing problems or vision disturbances, please contact your doctor.

EXJADE should be taken once daily on an empty stomach, at least 30 minutes prior to food, preferably at the same time every day.

EXJADE should not be chewed or swallowed whole, and should not be taken at the same time as aluminum-containing antacids (for example, Maalox®).

The most commonly reported side effects related to EXJADE in clinical trials were mainly nausea, vomiting, diarrhea, stomach pain, fever, cough, headache, increases in kidney lab values, and skin rash. These side effects were mild to moderate in severity. If you experience diarrhea or vomiting you should ensure that you continue to drink fluids.

Please see the full prescribing information.