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.
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 global and worldwide MDS awareness project looking at many aspects of MDS, including ageism in the treatment of this condition. It states the point that all patients, regardless of age should be offered the same high standard of care and must have access to the same treatment options.
This is an awareness campaign led by a coalition of world-wide patient groups, and a range of events and activities will be coming up in the autumn of 2012 – watch this space !
Please check the website and read the stories from patients all over the world.
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.
Bone Marrow Transplant blog – from one patient’s experience and perspective
Follows the fortunes of daughter and father who both have MDS myelodysplastic syndromes. Start with the oldest entry if you want to read the whole story.
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.
Public figures with MDS
Another source of good information about many aspects of MDS as well as research results
If you are looking for a counsellor or a therapist to help you cope better with the diagnosis of MDS – or any other aspect of living with a life-threatening condition. Talking through issues with a professional counsellor can be very helpful. This is a directory of private counsellors and therapists that may help you or someone in your family. If you are seeking such help, always check with your hospital first – as they may offer counselling free of charge. Do make sure to ask whether the person has experience of dealing with cancer issues.
If you have used this counselling directory, please let us know if you found it helpful. We are listing this website for a trial period.