NCCN Publishes New Patient Education Resources about Myelodysplastic Syndromes

New NCCN Guidelines for Patients® and NCCN Quick Guide™ series outline disease basics, testing, and treatment information about MDS so patients can make well-informed decisions about their cancer care.

FORT WASHINGTON, PA — Myelodysplastic syndromes (MDS) are the result of genetic alterations that cause blood stem cells to become abnormal, rendering bone marrow unable to create new, mature blood cells for release into the body. It is estimated that up to 15,000 new cases of MDS are diagnosed in the United States each year and that up to 75,000 Americans are living with MDS.i

To provide insight on MDS for patients and caregivers, the National Comprehensive Cancer Network® (NCCN®) has published the NCCN Guidelines for Patients® and NCCN Quick Guide™ for MDS. These resources are provided through funding from the NCCN Foundation® and, in part, through generous sponsorship from the Aplastic Anemia and MDS International Foundation (AAMDSIF).

“NCCN Foundation thanks the Aplastic Anemia and MDS International Foundation for their generous sponsorship of the NCCN Guidelines for Patients: MDS,” said Marcie R. Reeder, MPH, Executive Director, NCCN Foundation. “Access to these new, easy-to-understand resources empowers patients to ask important questions and make well-informed decisions about their cancer care.”

“We are grateful for the opportunity to partner with NCCN to develop this valuable patient resource,” said Kathleen Weis, CEO of AAMDSIF. “Education has always been a key component of our mission, and we are proud to have contributed to the creation of these important guidelines for MDS patients and their families.”

NCCN Guidelines for Patients, patient-friendly translations of the NCCN Clinical Practice Guidelines in Oncology (NCCN Guidelines®), are easy-to-understand resources based on the same clinical practice guidelines used by health care professionals around the world to determine the best way to treat a patient with cancer. Each resource features unbiased expert guidance from the nation’s leading cancer centers designed to help people living with cancer talk with their physicians about the best treatment options for their disease. These resources are available free of charge at NCCN.org/patientguidelines. Print versions are available to order on Amazon.com.

NCCN Guidelines for Patients and NCCN Quick Guide™ sheets—one-page summaries of key points in the patient guidelines—are written in plain language and include patient-friendly elements, such as questions to ask your doctor, a glossary of terms, and medical illustrations of anatomy, tests, and treatments. NCCN Guidelines for Patients and NCCN Quick Guide™ sheets DO NOT replace the expertise and clinical judgment of the clinician.

NCCN currently offers NCCN Guidelines for Patients for the following:  Breast, Colon, Esophageal, Kidney, Non-Small Cell Lung, Ovarian, Pancreatic, and Prostate Cancers; Acute Lymphocytic Leukemia (ALL); Caring for Adolescents and Young Adults; Chronic Lymphocytic Leukemia (CLL); Chronic Myelogenous Leukemia (CML); Hodgkin Lymphoma; Lung Cancer Screening; Malignant Pleural Mesothelioma; MDS; Melanoma; Multiple Myeloma; Non-Hodgkin’s Lymphomas; and Soft Tissue Sarcoma.

To download the NCCN Guidelines for Patients and NCCN Quick Guide™ for MDS, visit NCCN.org/patientguidelines.

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About NCCN Foundation
Through philanthropy, the NCCN Foundation® empowers people through knowledge and advances the mission of NCCN to improve the quality, effectiveness, and efficiency of cancer care, so that patients can live better lives. Visit NCCNFoundation.org.

About Aplastic Anemia and MDS International Foundation
AAMDSIF is the world's leading nonprofit health organization dedicated to supporting patients and families living with aplastic anemia, myelodysplastic syndromes (MDS), paroxysmal nocturnal hemoglobinuria (PNH) and related bone marrow failure diseases. It also funds scientific research and provides health professionals, patients and families with free educational programs. www.aamds.org


iMyelodysplastic Syndromes (MDS). AAMDSIF Home. http://www.aamds.org/diseases/mds. Accessed June 20, 2016.