MDS Foundation
The Myelodysplastic Syndromes Foundation was established by an international group of physicians and researchers to provide an ongoing exchange of information relating to MDS.
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The MDS Beacon
The mission of The MDS Beacon is to improve the treatment, care, and support available to current and future myelodysplastic syndromes patients worldwide.
To accomplish this mission, The Beacon has been online since 2009, providing independent, up-to-date news and other information for the MDS community.
MDS Alliance
MDS-Alliance is a global health initiative that aims to ensure MDS patients, regardless of their age, have access to the best multi-professional care. This initiative aims to provide patients and their caregivers and the health care team with the training tools and the information about MDS, including current treatment options.
Epidemiology website for blood disorders including MDS
Fascinating and very useful research and epidemiology website of the HMRN:
Haematological Malignancy Research Network (HMRN) was established in 2004 to provide robust generalizable data to inform clinical practice and research. It is a collaboration between researchers in the Epidemiology & Statistics Group (ECSG) at the University of York, a unified Clinical Network operating across 14 hospitals, and an integrated Haematological Malignancy Diagnostic Service (HMDS) at St James’s Hospital in Leeds.
https://www.hmrn.org/home
Provides specific data on MDS: https://www.hmrn.org/statistics/disorders/202
The Grove Bournemouth Hotel
The Grove is the UK’s only hotel of its kind exclusively for use by sufferers of Cancer and other life-limiting illnesses situated in a quiet leafy corner of Bournemouth – the idyllic setting for an escape and a well-deserved break. All of this secure in the knowledge that there is a nurse on duty 24/7 for advice and support. The Grove is non-profit making as it is owned and operated by the Macmillan Caring Locally charity supporting people suffering from cancer and other life threatening illnesses, their families, carers and friends.
Please note that ‘Macmillan Caring Locally’ is an independent Charity, it is not connected in any way to the national Charity Macmillan Cancer Support.
Further details available:
The Grove – UK’s first hotel exclusively for use by sufferers of Cancer and other life-limiting illnesses
The Grove – leaflet, do you need a holiday?
Counselling Directory
If you are looking for a counselor 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 counselor can be very helpful. This is a directory of private counselors 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 counseling free of charge. Do make sure to ask whether the person has experience of dealing with cancer issues.
If you have used this counseling directory, please let us know if you found it helpful. We are listing this website for a trial period.
MDS Beacon
Another fantastic source of reliable information about many aspects of MDS as well as latest research results of trials. Different patient and physician columns.
Highly useful.
Public figures with MDS
Astrophysicist Carl Sagan, writers Susan Sontag and Nora Ephron, writer Roald Dahl, actor Larry Hagman – and Good Morning America host Robin Roberts, amongst the wider known ones.
The Anthony Nolan Trust
Anthony Nolan is fully dedicated to funding research at the Anthony Nolan Research Institute. Led by Professor J Alejandro Madrigal, MD PhD FRCP FRCPath DSc, the Institute aims to improve the outcome of bone marrow transplantation (BMT).
