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NICE is an independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health. They are responsible for checking the cost-effectiveness of drugs for the NHS.
You could help save lives by registering with the British Bone Marrow Registry. BMR is a division of the National Blood Transfusion Service working in co-operation with other UK bone marrow / blood donor registries and the NHS Cord Blood Bank. Stem cell donations from cord blood can be made at specialist hospitals within the NHS. More information at www.nhscordblood.co.uk.
Macmillan Cancer Support improves the lives of people affected by cancer. They provide practical, medical, emotional and financial support and campaign for better cancer care.
They also provide an excellent confidential Benefits Helpline, should you need financial assistance with dealing with your MDS.
This is the other bone marrow registry operating in the UK and abroad.
They take donors aged between 18 and 55.
Pre-registration is possible from the age of 17.
Leukaemia CARE exists to provide vital care and support to all those whose lives have been affected by leukaemia, lymphoma, myeloma and the allied blood disorders. Our work extends to the welfare of families and carers, as well as that of patients themselves. Quite simply…’supporting a quality of life for all’
The essential handbook for patients considering or preparing for a bone
marrow transplant – or stem cell transplant – Seven Steps – written by Michelle Kenyon, the post-transplant nurse specialist at King’s College Hospital.
This is the new patient information material produced by the international MDS Foundation.
This information contained in this booklet is destined to patients in the USA, but a lot of it is applicable to patients in the UK.
This is the standard MDS Patient book for newly diagnosed MDS patients, their families and friends. It also contains information on iron overload.
A version in German is also available.
MDS UK will soon issue an adapted version for the UK.
The MDS Foundation is a multi disciplinary, international organisation devoted to the prevention, treatment, and study of the myelodysplastic syndromes. The organisation is based upon the premise that international cooperation will accelerate the process leading to the control and cure of these diseases.
This is the specialist haematologist Forum which was established some six years ago with the remit to increase the awareness of MDS through education, setting up regional MDS registries and increasing the recruitment of MDS patients to National and International trials throughout the UK.
