Myelodysplastic Syndromes Advocacy, Education, and Support Groups

The following organizations provide a variety of support programs and educational materials for people with myelodysplastic syndrome (MDS) and their family members, caregivers, and friends. However, this is not an endorsement of these organizations and the information they provide. You should always discuss any questions or concerns you have with your health care provider.

American Cancer Society

http://www.cancer.org

Toll-free information line: 1-800-ACS-2345

TTY: 1-866-228-4327

E-mail: http://www.cancer.org/asp/contactUs

The American Cancer Society (ACS) is a national organization working to eliminate cancer as a major health problem through research, education, advocacy, and service. ACS operates the National Cancer Information Center, a call center that is available 24 hours a day, 7 days a week. The center answers questions about cancer, links callers with resources in their communities, and provides information on local events.

Aplastic Anemia and MDS International Foundation

http://www.aplastic.org/aplastic

Phone: 1-800-747-2820

Global Support Network: 1-800-747-2820

E-mail: help@aamds.org

The Aplastic Anemia and MDS International Foundation is a patient advocate and support organization for several bone marrow failure diseases, including MDS. The foundation offers updates on medical and drug information, patient stories, and a global support network.

CancerCare

http://www.cancercare.org

Telephone: 1-800-813-4673

E-mail: info@cancercare.org

CancerCare, founded in 1944, is a national nonprofit organization that provides free, professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones, and the bereaved. CancerCare programs–including counseling, education, financial assistance, and practical help–are provided by trained oncology social workers and are completely free. 

Phone: 1-800-955-4572

E-mail: http://www.leukemia-lymphoma.org/all

The Leukemia and Lymphoma Society is a voluntary health organization that funds cancer research and provides education and patient services related to leukemia, lymphoma, and other blood cancers, including MDS. The society’s website offers decision tools for talking to your doctor and choosing a treatment center, a clinical trial service, treatment information booklets, fact sheets, and online discussion boards.

M. D. Anderson Cancer Center
http://www.mdanderson.org
1-800-392-1611 (USA)

Department of Leukemia
http://www.mdanderson.org/diseases/adultleukemia
713-792-7305

Leukemia Insights
http://www.mdanderson.org/publications/insights

The Leukemia Department at M. D. Anderson Cancer Center offers multiple research-based programs with new agents or strategies in ALL.  Their programs are updated on the above websites.

Myelodysplastic Syndromes Foundation

http://www.mds-foundation.org

Phone: 1-800-MDS-0839

E-mail: Patientliaison@mds-foundation.org

The MDS Foundation is an international multidisciplinary organization founded by physicians and researchers. The foundation is dedicated to the prevention, treatment, and study of MDS. The website’s patient information section includes insurance and reimbursement resources, patient handbooks, and questions and answers on treatments.

National Cancer Institute

http://www.cancer.gov

Toll-free information line: 1-800-4-CANCER (1-800-422-6237)

TTY: 1-800-332-8615

LiveHelp: https://cissecure.nci.nih.gov/livehelp
 
E-mail: http://www.cancer.gov/contact 

The National Cancer Institute (NCI) is a federal agency and a component of the National Institutes of Health. NCI supports and conducts research, training, and education. NCI operates the Cancer Information Service, which answers questions about cancer by telephone, TTY, instant messaging (through the LiveHelp service), and e-mail. NCI’s website includes information about various cancer topics, research, and cancer statistics.