The MDS Beacon™

The AA&MDSIF is an independent, nonprofit organization whose mission is to support patients, families, and caregivers coping with MDS, aplastic anemia, and related bone marrow failure diseases through patient support and research. The foundation strives to build awareness and to provide educational materials, medical information, and access to peer support via a global network of volunteers who offer hope to those struggling with these diseases.

The Aplastic Anemia & Myelodysplasia Association of Canada exists to inform the public about aplastic anemia and myelodysplasia, provide a Canada-wide support network for patients, advocate and raise funds for medical research, and promote Canadian Blood Services blood programs including OneMatch, a bone marrow donor registry.

The aim of the European Working Group of MDS in Childhood is to bring together clinicians and researchers with an interest in childhood MDS and Juvenile Myelomonocytic Leukemia. Their goal is to initiate collaborative studies, disseminate information about childhood MDS, serve as a public resource for patients and physicians, as well as offer non-public forms and presentations to EWOG-MDS members.

Leukaemia & Lumphoma Research is the only charity in the UK dedicated exclusively to researching blood cancers and disorders. The site has an extensive section on different treatment options, from low to high intensity, so patients can be informed and talk to their doctors about individualized courses of therapy.

The Leukemia & Lymphoma Society (LLS) is the world’s largest voluntary health organization dedicated to funding blood cancer research, education, and patient services. In addition to background about the disease, their web page also provides incidence, survival, and mortality statistics. The site encourages individuals to become Advocates Network members, where they can communicate with legislators about issues that affect blood cancer patients, family members, or caregivers.

The Leukemia Research Foundation’s mission is to conquer leukemia, lymphoma, and MDS by funding research into their causes and cures, and to enrich the quality of life of those touched by these diseases. Their Web site has an extensive news and events list for patients to be informed and get involved with local affairs.

The MDS Foundation is a multi-disciplinary, international organization devoted to the prevention, treatment, and study of MDS, especially through the ongoing exchange of information between researchers, patients, and physicians.  The organization is dedicated to furthering the research of MDS.  It invites young investigators to submit their proposals for either basic research or clinical management and offers grants to a select few.

The Nordic MDS Group is a scientific organization aiming to improve treatments for MDS patients, and to facilitate research about the disease. The Web site is directed towards hematologists from Nordic countries (Denmark, Finland, Iceland, Sweden and Norway); however, patients will also find useful information, such as details about ongoing European clinical studies and updated treatment guidelines.  The site is available in English as well as each of the Nordic languages.

The Forum was established some three years ago with the remit to increase the awareness of MDS through education, setting up regional MDS registries and increasing the recruitment of MDS patients to National and International trials throughout the UK.