Rare cancer forum coming to London 

26/02/2013 00:00 

International experts leading the way in the treatment of a very rare form of cancer will come together to raise awareness of the condition next month (March).

A 'meet the doctor' session from last year's forum

A 'meet the doctor' session from last year's forum

University College London Hospitals NHS Foundation Trust (UCLH) offers some of the latest drugs and treatments for Waldenstrom’s macroglobulinaemia (or lymphoplasmacytic lymphoma) a bone marrow cancer, associated in most cases with the presence of an excessive amount of protein in the blood.

On March 17, patients, clinicians and charitable organisations including Macmillan Cancer Support and the Lymphoma Association, will gather at the Royal College of GPs for for the 4th International Forum on WM to share their experiences and increase awareness.

WM is a rare cancer and fewer than 100 people are diagnosed with it every year in the UK. Most people who develop WM are over 65 and it is slightly more common in men than women. The cause of WM is not known

Shirley D’Sa, haematology consultant who runs the UCLH WM clinic, said:  "This Forum will mount a three-pronged attack against WM by bringing together patients, physicians and organisations such as the Lymphoma Association, Rare Connect and the European WM Network.

“The forum will focus on the unmet needs of patients with WM across the UK by providing valuable and current information, as well as by encouraging participation, cooperation and dialogue. It will get to the heart of what makes the disease tick and the means of combating it effectively.”

Delegates at last year's forum

Delegates at last year's forum

UCLH runs a bespoke clinic which was set up several years ago to focus on the special needs of patients with this rare form of lymphoma. Patients with rare diseases carry an additional burden of living with a condition that few have heard of and many doctors feel ill at ease with due to the limited evidence on which to base clinical decisions.

Thanks to the work of the clinic, valuable experience has been gained about how to treat the condition using innovative approaches. These include the use of autologous stem cell transplantation for younger, fitter patients with high risk WM with the aim of inducing a longer remission than would be achieved by conventional approaches alone. In addition, the use of new treatment agents is offered where possible. Patients also have the benefit of  specialist input from a WM clinical nurse specialist.

Thanks to the significant personal contributions by UCLH patients, Roger Brown and Phil Manning, UCLH has been instrumental in establishing a charitable organisation called WMUK – the UK’s point of contact for patients and clinicians who need more information on the condition, particularly the latest forms of treatment which are easier to access in some areas than others. This patient-physician partnership is proving an effective resource for WM patients across the UK, by offering valuable information as well as encouraging participation and dialogue.

Roger said: "As a patient with WM, the service provided by Shirley and her team at UCLH really is first class. It is centred on the patient and doctor working closely together which enables patients to become experts in managing their own disease. I have found it incredibly empowering. The forum provides an opportunity for the most eminent doctors in this condition to share their expertise with patients who in turn can discuss some of the challenges they face in managing it."


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