Quality of Life work done by support groups

Great article published in the specialist clinical journal Oncology Practice regarding the importance of Quality of Life (QOL) as perceived by patients – as opposed to physicians.

It covers the results of an internet based survey amongst myeloma patients about QOL and various levels of importance of side-effects and symptoms.

It also stresses the work done by various haematology patient support groups to highlight the difference in priorities in QOL.

This article is based on the outcome of  this years EHA Congress (Amsterdam June 2012 – European Haematology Association), and the 3rd meeting of haematology patient support groups with the EHA board.  MDS UK is represented there thanks to the international work done by the MDS Foundation.

The article can be found here:

Cancer Patients Differ With Doctors on QoL Issues – EHA Patient Advocacy Session see http://ow.ly/1Op7d8

The main interviewees are Eric Low from Myeloma UK and Jan Geissler from CML Advocates Network – two of the main members behind the Patient advocacy work undertaken at the EHA congresses, together with Lymphoma, Leukaemia, Thalassaemia and MDS patient groups.

We thank both Eric and Jan for this great interview.

For next years EHA congress in Stockholm, patient groups have been given 3 sessions to promote the benefit of cooperation between patient advocates and clinicians, researchers and pharma. This will be the 3rd year patient groups are given such an opportunity at the EHA congress.  Two years running we had been given 1 single session and presented to a packed and very keen audience of clinicians, researchers and pharma representatives each time.

We will post updates on the programme at next year’s specialist EHA congress and feedback on news – as ever.


Another specialist congress promoting the benefits of patient support groups is the EBMT – European Blood and Marrow Transplantation.

They have a Patient and Family Day attached to each congress.

EBMT 2013 will take place in London.
MDS patients and families are strongly encouraged to attend.

Here is the link to the website:

Further details of the programme will be uploaded there nearer the time.



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