Useful Links
The Forum was established some three 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.
The Myelodysplastic Syndromes Foundation
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.
MDS Foundation Patient Booklets
This is your standard MDS Patient booklet for newly diagnosed MDS patients, their families and friends. As well as a specific booklet on iron overload.
Both booklets are published by the international MDS Foundation and are regularly updated. They are also available in many different languages – online and in paper format.
This is a new booklet published by the EMHF (European Men’s Health Forum) destined to recently diagnosed MDS patients, their family and friends.
As this is a brand new publication, we need your feedback – do you find it useful, anything you particularly like or dislike? Please email us your comments on mds-uk@mds-foundation.org
This booklet is available in addition to the standard MDS Foundation booklet.
Blood and Bone marrow transplantation
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 a website regarding Iron Overload. It contains information for highly transfused MDS UK patients at risk of iron overload. This website has been developed with help of specialist nurses. There are general sections on MDS, but also some specific sections around blood transfusions and iron overload/iron toxicity.
Leukaemia and Lymphoma Research
Leukaemia Research is the only charity in the UK dedicated exclusively to researching blood cancers and disorders including leukaemia, Hodgkin’s and other lymphomas, and myeloma.
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’
Over 6,000 pages of up-to-date cancer information, practical advice and support for cancer patients, their families and carers. Now merged with Macmillan Cancer Support.
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.
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.
National Institute for Health and Clinical Excellence
NICE is an independent organisation responsible for providing national guidance on promoting good health and preventing and treating ill health.
You may be the unique match for a patient with terminal leukaemia. Sharing your immune system could save their life.