This site provides information about myelodysplastic syndromes (MDS), which can develop when the bone marrow produces poorly functioning, immature blood cells rather than healthy blood cells. Here you can find information about the diseases, drug information, a global support network, and clinical trial information. There is an online glossary feature that allows you to see definitions of medical terminology by hovering over the words with dotted lines. In the Online Learning Center, you will find video recordings of educational sessions and interviews with leading medical experts. In the "Q&A Library", you will find answers to a wide variety of frequently asked questions, covering such issues as blood transfusions, bone marrow transplantation, and financial issues. In the "Patient Clinical Trials" section, you can also find a listing of clinical trials for myelodysplastic syndromes, information about the drugs used to treat these diseases, and information about the Foundation's Patient Travel Fund program, which provides up to $500 for low-income families to pay travel costs related to participation in clinical trials or to determine eligibility for clinical trials. You also can call the Foundation's toll-free number, 800-747-2820, get answers to your questions about aplastic anemia and MDS, or for emotional support.
In this site's Disease Information section, you will find information about the specific types of leukemias and lymphomas, as well as myeloma. Information includes risk factors, symptoms, and diagnosis. A separate section provides general information about treatment options for rare blood cancers, such as myelodysplastic syndrome and myeloproliferative disorders.
In the Patient Services section, there is information for the newly diagnosed, including a program called First Connection, which connects newly diagnosed patients, caregivers, and their families with a trained peer volunteer who can answer questions and share their experiences by phone. There is a link to the Society's Patient Financial Aid Program, which offers financial reimbursement for some medications, transportation, and procedures for those in need. There is also a link to the Society's Co-Pay Assistance Program, which offers financial support towards the cost of insurance co-payments for prescription drugs, if you qualify.
You can access the Society's Live Patient Help (M-F 10:00 AM- 5:00 PM EST) or call 800-955-4572 toll free for telephone support (M-F 9:00 AM - 6:00 PM EST). There is also a state-by-state listing of Family Support Groups, online discussion groups, and recent news from Reuters Health about leukemia and lymphoma and other blood-related cancers. The site indicates when cancer information was last updated.
The site also provides a variety of free educational brochures and pamphlets, including an online booklet Blood and Marrow Stem Cell Transplantation. It describes the transplant procedure, potential complications, emotional concerns, and the recovery period. The booklet is also available in Spanish, French, and Portuguese.
This site offers a helpful booklet called 100 Questions & Answers About Myelodysplastic Syndromes, which you can request by calling 1-800-MDS-0839. In their Patient Information section, there is also information about new treatments, including arsenic trioxide, and in the MDS Centers of Excellence section, you will find an international list of medical centers that are well known for treating myelodysplastic syndromes. You can also download an MDS Educational Resources Order Form to request a number of other patient publications, including Understanding MDS: A Patient Handbook and Transfusion-Dependent Iron Overload and MDS: A Handbook for Patients, each available in 16 languages. There is contact information for a patient liaison, but it's not clear what services this liaison can provide.
