Welcome to the Waldenstrom’s Macroglobulinaemia (WM) United Kingdom (UK) Support Group which was officially established in 2000. We are a non-profit organisation created to support those suffering from WM as well as their family and friends in UK and Eire.

Although there are only a few of us who actively devote time each day to supporting UK members, we are supported by others within our group who help our team focus on the services that our members need and offer additional support, advice and guidance when required.

Our support group is also an affiliated member of the European WM Network, (EWM network) who are members of the European Cancer Patient Coalition, (ECPC) and European Organisation for Rare Diseases (EURORDIS). Their aim is to collectively represent all WM patients’ interests at a European level. This way WM patients are given a voice at European health institutions and in European health politics. Hence their motto “Patients for Patients”.   

Other Prominent Groups Who Support Us

IWMF

IWMF’s Mission Statement

‘To provide a means for those with Waldenstrom’s macroglobulinaemia, their family members, doctors, and others with an interest in the disease to find mutual support and encouragement, to provide information and educational programs that address patients’ concerns, and to promote and support research leading to a cure.’

We rely on the free publication given to us by IWMF in support of our members and the newly diagnosed.  The WM (UK) Support Group is grateful for the support the IWMF have given us over the years and hope this will continue.

Bing Centre

The Waldenstrom’s Macroglobulinaemia program at Dana Farber Cancer Institute (DFCI) was founded in 1999 by Dr. Steve Treon with the help of patients, caregivers and DFCI scientists in an effort to advance our understanding of the cause of WM, and to pursue novel therapies. In 2005, the WM program was officially designated as the Bing Centre for WM, in honor of Peter S. Bing M.D., former Chair and current Trustee of Stanford University.

The Bing Centre for WM attracts hundreds of patients each year from all over the world, and is the largest referral Centre for this disease. The WM clinic is involved in numerous intra- and extramural collaborative studies into the natural history, morbidity, genetic predisposition, and treatment of WM, and has served to extend training in this uncommon disease to medical students, residents, physicians, and allied health care givers. Each year, several internationally recognised WM experts are invited to participate as visiting professors.

Among the accomplishments of the Bing Centre for WM has been in defining the incidence and clinicopathological characteristics of the familial form of WM which effects about 20% of all WM patients, and is characterised by the presence of WM or other B-cell malignancies among relatives of WM patients. To further efforts into the familial form of WM, the Bing Centre for WM established a family registry which is supported by a major grant from the International WM Foundation. The family registry has recruited over 600 WM patients and their family members. These studies have led to important insights into the genetic basis of WM including the identification of increased incidence of hypogammaglobulinaemia and monoclonal gammopathy in family members of patients with WM, as well as the identification of mutations in genes predisposing to Common Variable Immunodeficiency Disorder (CVID) in WM patients.

An important complement to the basic research efforts into WM has been the conduct of clinical trials solely dedicated to WM patients. As part of these efforts, the Bing Centre for WM organised the Waldenstrom’s Macroglobulinaemia Clinical Trials Group (WMCTG) which has conducted multi-centre clinical trials utilising monoclonal antibodies alone and in combination with nucleoside analogs, cytotoxic and immunomodulating agents, and the proteasome inhibitorbortezomib, as well as single agent studies with phosphodiesterase, stem cell factor and mTOR inhibitors. lead to changes in the published consensus approaches to the treatment of WM patients.

Lastly, an important focus of the Bing Centre for WM has been physician and patient education. Among the accomplishments of the Bing Centre for WM has been the organisation of the 2nd (Athens, Greece), 3rd (Paris, France), and 5th (Stockholm, Sweden) International Workshops for WM, the International Symposiums on WM held as part of the International Myeloma Workshops (Banff, Canada; Salamanca, Spain; Sydney, Australia; Kos, Greece), and the International Conference on Malignant Lymphoma (Lugano, Switzerland), the 1st (Boston, USA), 2nd (Los Angeles, USA), and 3rd (Boston, USA) International Summits on WM, as well as local and regional WM support group meetings in the U.S., Canada, Europe, and Australia.