Join in solidarity with the 300 million people around the world who have a rare disease by lighting or decorating your home with the Rare Disease Day colours at 7 PM your local time on 28 February 2023. Rare Disease Day is a globally-coordinated movement that calls for action for people living with a rare disease to have equal opportunities in healthcare, access to diagnosis and therapies and social opportunity. Find out more.

A recording of a meeting with the clinical trial investigators Dr Manoj Raghavan, Dr Stephen Jenkins, Dr Farhat Khanim and Professor Chris Bunce, discussing the REPAIR-MDS trial with a large group of MDS UK patients. The topics include: the current treatment options for Low-Risk MDS – a description of the REPAIR-MDS clinical trial and the general clinical trial processes
– eligibility for the trial, expectations, treatment periods, schedule of events, importance of completing the trial and where to find out about the progress of the trial. The presentation was followed by Q&As.

The cold periods this winter bring the possibility of power-cuts across the country.  If you have a long-term illness (like MDS or CMML), the energy networks can offer you extra help and support via a free service called the Priority Services Register. Find out how to sign up and get other tips on what to do in a power-cut.

QoL (Quality of Life ) in High-Risk MDS & AML: A recorded Zoom session with specialist consultants & MDS UK patients. On December 15th 2022, Dr Pramila Krishnamurthy, and her colleagues Dr Beth Payne, and Dr Ian Thomas, led this valuable session introducing their research project on QoL (Quality of Life ) in High-Risk MDS & AML to a group of MDS UK patients. The presentation was followed by Q&As.

On 27th January 2023 Professor Manoj Raghavan, Consultant haematologist, University Hospital Birmingham and a team of specialists involved in Repair MDS, will be leading a presentation via Zoom on Low-Risk MDS. The topics covered will include; the standard treatments available, the trials for this type of MDS and the new clinical trial Repair MDS, using re-purposed drugs. The meeting would be of interest to patients with Low-Risk MDS, ‘watch & wait’ or pre-MDS. This meeting will be recorded and available on the website later.

King’s Health Partners Haematology are looking for two patient/carer representatives to sit on the KHP Haematology programme board. Interested patients/carers should register their interest by contacting becky.barnes@kcl.ac.uk / 07773 147379 by 31st January 2023. 

A recording of a valuable session on Low risk MDS by Dr Dominic Culligan, consultant haematologist at Aberdeen Royal Infirmary, to a large group of MDS UK patients. The presentation is followed by Q&As between Dr Culligan and the group of patients. The recording is approximately 1hr 50m.

Give as you Live is a free and easy way to raise money for us – without having to donate anything yourself – simply by shopping online via the Give as you live website. It’s very easy, all you need to do is sign up to Give as you Live online either from this page or the Give as you live website.

Can you imagine being diagnosed with a condition and your healthcare team omitting to mention it is a type of cancer? Yet this has been the case for some people diagnosed with MDS. MDS is a type of cancer and it is important that everyone calls it a cancer. By not mentioning the term ‘cancer’ […]

MDS is difficult to diagnose so by raising awareness of the signs and symptoms and taking action to get a blood test, this year’s MDS World Awareness Day aims to improve diagnosis.  As with all cancers, fast action enables better treatment and faster diagnosis.