Additional resources for myelodysplastic syndromes
More information from your American Cancer Society
We have a lot more information that you might find helpful. Explore www.cancer.org or call our National Cancer Information Center toll-free number, 1-800-227-2345. We’re here to help you any time, day or night.
In addition to the American Cancer Society, other sources of patient information and support include:
Aplastic Anemia & MDS International Foundation, Inc.
Toll-free number: 1-800-747-2820
Has a variety of programs and resources available throughout the US and internationally including patient educators available by phone and email, a peer support network, patient and family support groups, and educational materials including online webinars.
Leukemia & Lymphoma Society
Toll-free number: 1-800-955-4572
Has a variety of service programs and resources available throughout the US and Canada including: the Information Resource Center, staffed by health care professionals, available via the toll-free number; free publications on all forms of leukemia and related topics; First Connection, a telephone-based peer support network for patients and survivors; family support groups; education teleconferences and Webcasts – a schedule is on the website.
National Cancer Institute (NCI)
Toll-free number: 1-800-422-6237 (1-800-4-CANCER)
Their “Cancer Information Service” offers a wide variety of free, accurate, up-to-date information about cancer to patients, their families, and the general public; also can help people find clinical trials in their area.
National Coalition for Cancer Survivorship (NCCS)
Toll-free number: 1-888-650-9127
Has publications on many cancer-related topics; also offers the Cancer Survival Toolbox – a free program that teaches skills that can help people with cancer meet the challenges of their illness.
The Myelodysplastic Syndromes Foundation
Toll-free number: 1-800-MDS-0839
Has an international information network that provides patients with referrals to Centers of Excellence and contact names for available clinical trials.
Bone marrow and peripheral blood stem cell transplants
Caitlin Raymond International Registry (merged with Be The Match see below)
National Bone Marrow Transplant Link (nbmtLINK)
Toll-free number: 1-800-546-5268 (1-800-LINK-BMT)
Programs and services include: information and referrals to meet a wide range of needs; support via one-on-one conversations with trained peer support volunteers who are transplant survivors, caregivers, and donors; telephone support groups, facilitated by a clinical social worker, that link patients and families together to offer mutual support and coping strategies; and the nbmtLINK Online Resource Library – a comprehensive, searchable library giving access to the latest transplant information.
Be the Match (formerly the National Marrow Donor Program; also merged with the Caitlin Raymond International Registry)
Toll-free number: 1-800-627-7692 (1-800-MARROW-2)
Provides a registry of volunteer bone marrow donors and cord blood units (the largest listing in the world), as well as a searchable listing of transplant centers that can be accessed directly at www.marrow.org/access. This listing contains information that may help a patient choose a transplant center. Also supports patients and their doctors throughout the transplant process, from diagnosis through survivorship; matches patients with the best donor or cord blood unit using innovative science and technology; has free educational materials; and offers financial assistance to eligible underinsured patients through the Patient Assistance Program.
No matter who you are, we can help. Contact us anytime, day or night, for information and support. Call us at 1-800-227-2345 or visit www.cancer.org.
Last Medical Review: 02/10/2014
Last Revised: 07/02/2015