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The mission of the foundation is to increase education and awareness of amyloidosis within the community leading to earlier diagnosis and improved treatment. Our vision is to be a leading organization working to care for and cure patients with amyloidosis.
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The support we provide includes information resources from the medical community involved in the research and treatment of Amyloidosis.
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A listing of Blood Cancer medical research trials actively recruiting patient volunteers.
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A support website by patients for patients with Cold Agglutinin Disease.
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A coalition of three Harvard afilliated hospitals: Dana-Farber Cancer Institute, Massachusetts General Hospital, and Brigham and Women's Hospital.
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This is the official website for the International Patient/Physician Summits on WM. Our last Summit was March 2011 in Orlando, FL. This website contains the proceedings of each conference. Posted materials include Summit faculty biographies, abstracts, slide presentations, media galleries, sponsors, online DVD order form, and contact information for conference organizers.
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The IWMF provides a means for those with Waldenstrom’s Macroglobulinemia, doctors and others with an interest in the disease, to find mutual support and encouragement. The IWMF provides information and educational programs that address patients’ concerns, and promotes and supports research leading to a cure.
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This is the official website for the International Workshops on WM. These conferences seek to bring together researchers from across the globe to discuss the most recent breakthroughs in clinical and laboratory studies in this disease. The papers from the 5th International Conference in Stockholm, Sweden (October, 2008) were published in Clinical Lymphoma & Myeloma, March 2009. Abstracts from this conference can also be obtained from the WM Workshop Stockholm Abstracts section. The most recent conference was in August, 2014 in London, UK, where research presented at this conference was published in the New England Journal of Medicine (NEJM). Please visit the WM Workshop Website for more information on all of our International Workshops for WM.
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The Lymphoma Research Foundation (LRF) is the nation’s largest non-profit organization devoted exclusively to funding innovative lymphoma research and providing people with lymphoma and healthcare professionals with up-to-date information about this type of cancer. LRF’s mission is to eradicate lymphoma and serve those touched by this disease.
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Waldenstrom's Macroglobulinemia NCI Family Study Newsletter.
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Rare Disease Communities - Waldenstrom's Macroglobulinemia. Information, resources, discussions, links to other international patient & caregiver support groups. This site contains a wealth of information regarding the ongoing efforts for treating and managing this disease all around the world.
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The official website for Dr. Steven Treon, Director of the Bing Center for Waldenstrom's Macroglobulinemia.
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The EWMnetwork is intended to create an umbrella organisation for all European WM patient support groups or patient support organisations. The EWMnetwork was initiated by representatives of European patient organisations from Belgium, The Netherlands and UK in co-operation with the US based International Waldenstrom's Macroglobulinemia Foundation (IWMF). The EWMnetwork emphasizes exchange of information between WM patient support organisations and such questions as accessibility to treatment, medication, trials and stimulation of research on a European level.
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The definitive resource for information on blood cancers. Log on to find the latest news on disease characteristics, diagnosis and treatment, clinical trials, and breaking research findings.
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The Waldenström's Macroglobulinemia Clinical Trials Group is comprised of over 20 major cancer centers around the world. Our mission is to maintain active clinical trials year round in an effort to constantly improve our understanding and continue to offer patients the most effective treatments for Waldenström's macroglobulinemia. By maintaining an extensive contingent of collaborating centers, we hope to be better able to enroll patients in our trials without delay. Not only does the WMCTG allow more convenient patient access to treatment, but will also facilitate completion of clinical trials in a more timely manner.
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Von Willebrand disease (VWD) is a genetic disorder caused by missing or defective von Willebrand factor (VWF), a clotting protein. VWF binds factor VIII, a key clotting protein, and platelets in blood vessel walls, which help form a platelet plug during the clotting process. The condition is named after Finnish physician Erik von Willebrand, a who first described it in the 1920s. VWD is the most common bleeding disorder, affecting up to 1% of the US population. It is carried on chromosome 12 and occurs equally in men and women. Click on the following link: How I treat the acquired von Willebrand syndrome to download the May, 2011 publication on this topic.
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The Waldenström France Association was created in December 2009 to help every new Waldenström Francophone patient. With the approval of the IWMF, some members of our association translated the Torch newsletters and Booklets into the French language and so the WF association can provide information about Waldenström Macroglobulinemia in their own language through the bibliotheca of Its brand new website. The association made and printed a leaflet which was sent to all the hematologist centers in France in the first year of existence. The association organizes each year in Paris or Vienne a meeting with a session patient-doctor with the participation of the most important French WM specialists (in 2011 in Paris Véronique Leblond was the doctor for the session).
The association organize also some stages for its member to learn more about WM and research about this pathology. The association recently posted to its website many very interesting things for all francophone MW patients around the world. The association has a very active Talklist for all Francophone members (more than 153) from Canada, Belgium, Brazil, Switzerland, North Africa and France. We are a small association with no more than 85 members but a very active one to promote all kind of information about WM to help any new WM patients who are not fluent in English.
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This is a central point for information for UK members, newly diagnosed and other interested parties as well as UK doctors who we hope will eventually use this as a medium to inform WM suffers of ongoing research projects and clinical trails as well as any other information they wish publicized.
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A group for those affected by Waldenstroms Macroglobulinemia who can post freely with respect to privacy from Facebook. Only members can post and see posts. We welcome everyone given this Dx as well as caregivers, with an open heart.
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Here's news and info about three primary blood cancers, Lymphoma, Myeloma and Leukemia with a decided patient's perspective. I hope this helps whether you're newly diagnosed or veteran survivor.
