Interesting/Useful Links

The first three links below are major sources of information and I recommend you visit these first!

The Myelodysplastic Syndromes Foundation,

PO Box 353, 36 Front Street, Crosswicks, New Jersey. NJ 08515 tel: 1-800-MDS-0839 [calls from outside USA 609-298-6746] fax: 609-298-0590.
This organisation produces what I consider the best write-up of MDS yet prepared for the normal patient. Largely devoid of 'medicalese', I think it should be compulsory reading for anyone with the ailment, explaining as it does so many of the things which the normal GP or specialist just does not have time to go into. The report, entitled Understanding Myelodysplastic Syndromes - A Patient Handbook is written by two professors at Rochester University, runs to 10 pages and may be downloaded from the Net here (or go to their home page at www.mds-foundation.org and click on 'Patient Information'). The Foundation has organised several international symposia for specialists in the subject and runs an updated list on US and European research, as well as a forum page for both patients and professionals. It also has loads of resources on particular treatments, latest drug trials and approvals status, and (a major concern for US readers) about paying for treatment.

MarrowForums

This is a wonderful site providing support for Aplastic Anemia (AA) and MDS patients, friends, families, and care providers, set up and run by people who have had first hand experience of the subject. Many people suffering from MDS find the experiences people describe here very helpful in understanding their own conditions. After all, it's unlikely anyone in your close circle of family and friends will have encountered this disease or its treatment, and therefore won't be in a position to advise you! You can browse archived material at will, but if you want to post messages yourself or use the archive search facilities you will need to register. A particularly useful feature is that you can request an email 'daily digest' of posted messages so you can see what's happening.

The Aplastic Anemia and MDS International Foundation Inc,

PO Box 310, Churchton, MD 20733 USA. tel: 800-747-2820 (in USA) or +1 410.867.0242. fax: +1 410-867-0240: main e mail is: help@aamds.org.
This excellent, largely voluntary, organisation produces a range of booklets on various aspects of the subject which they will send upon request. They also hold annual conferences, produce a quarterly newsletter and give financial assistance to selected research programmes in USA in an effort to find answers to many of the ailment's problems. They also run a global volunteer network of those with whom patients can correspond to share experience.

Thalidomide in Oncology - Medscape articles about the use of thalidomide and its relatives in MDS treatment

American Society of Hematology marrow failure pages - many recent articles on AA and MDS as well as many others.

Achievements in Understanding and Treatment of Myelodysplastic Syndromes - a review of current thinking on approaches to MDS, on the American Society of Hematology Education Pages

Eva Hellström-Lindberg, (Chair), Cheryl Willman, A. John Barrett and Yogen Saunthararajah [Hematology (Am Soc Hematol Educ Program) 2000;:110-132]

Vanderbilt-Ingram Cancer Centre's pages on BMT.

BMT InfoNet: This is a most useful site for BMT information, including a complete list of centres offering transplants in the US and Canada, with details of how many they have performed over the last three years and the age-range limit they apply to the various categories.

The Bone Marrow Support Group is another very helpful site, based in Ireland.

The Leukaemia Research Foundation in the UK has this page which covers most of the ground in this article, and more besides.