MDS and You!

This website is for you, who either have MDS or is a relative of someone with MDS or works with people, who have MDS. This site provides you with links to international and national organisation with a focus on MDS. Just click on the logo of the organisation.

MDS - in case you didn't know - is Myelodysplastic Syndromes - a group of bone marrow diseases. For online discussions among MDS patients and relatives about living with MDS the most active discussion fora are those of the MDS Foundation and the MDS UK Patient Support Group - see below, and the group Marrowforums created by a former board member of Aplastic Anemia and MDS International Foundation.

This website is not associated with the MDS Foundation, but maintained by MDS DK Patient Support (MDS DK Patientstøtte)

Just click on the logo of the relevant organisation to go to that organisations homepage

MDS Alliance - a worldwide association of patient support groups helping MDS patients and their families.

Aplastic Anemia & Myelodysplasia Association of Canada (Canada)

LyLe - Patientforeningen for Lymfekræft, Leukæmi og MDS (Denmark). Has a video library of patient stories, some with English subtitles.

Aplastic Anemia and MDS International Foundation (USA). A founding member of MDS Alliance.

MDS Foundation (USA). A founding member of MDS Alliance.

MDS UK Patient Support Group. A founding member of MDS Alliance.

Associacion Linforma Mieloma y Leucemia (Spain). Founding member of MDS Alliance.

MDS DK Patientstøtte (Denmark) - Now a part of LyLe. Until the spring of 2016 a small independet MDS support group.

Blodcancerförbundet (Sweden) is an umbrella group for all blodcancer patients.

Connaître et Combattre les Myélodysplasies (France). Founding member of MDS Alliance.

MDS Net Deutschland e.V. (Germany). A founding member of MDS Alliance.

MDS Patienten Interessen Gemeinschaft (Germany)

MDS Ireland Support Group (Ireland).


Hematon (Netherlands)

MDS patient support groups sponsored by MDS Foundation

These groups have the benefit of having their websites hosted together with the MDS Foundation website. This was originally Niels Jensen's idea with the mds-and-you.info site. Each country would have a website xxyyy.mds-and-you.info, where xx indicate the country, e.g. dk for Denmark, uk for United Kingdom, ca for Canada, us for USA etc, and yyy indicate the abbreviated group name, e.g. psg for either Patuent Support Group or Patient StøtteGruppe. And that is the reason the URL for the Danish MDS support homepage is still dkpsg.mds-and-you.info.

Belgische MDS Contactgroep (Belgium)

A Belgian MDS group was established in 2011 after a meeting in Edinburgh hosted by the MDS Foundation. The name of the group is Belgische MDS Contactgroep.

Canadian Patient Support Group - Toronto (Canada)

A Canadian MDS patient support group has also been established in Toronto, Ontario, Canada. There website is http://mds-foundation.org/psg/cpsgt/ .

Canadian Patient Support Group - Hamilton Health Sciences (Canada)

Another Canadian MDS patient support group has been established in Hamilton, Ontario, Canada in connection with Health Science Centre there. There website is http://mds-foundation.org/psg/cpsghhs/.

Japan MDS Patient Support Group (Japan)

There is also an MDS Patient Support Group in Japan. There website is http://www.mdssupport.net/.

The MDS Life Beyond Limits campaign was created by Celgene about a decade into the new millenium to promote better treatment of elderly patients with MDS. The message of the campaign was, that treatment also have benefits for elderly patients. American photographer Ed Kashi traveled the world to take pictures of elderly MDS patients, and a selection of these pictures were exhibited at a Photo Exhibition in San Diego in connection with ASH 2011. Life Beyond Limits was a global health initiative financed and promoted by Celgene with the aim to ensure that older cancer patients have the best possible quality of life regardless of their age.

On the MDS Life Beyond Limits website you could read stories from MDS patients in their own words. Get answers to questions such as "What is life like after being diagnosed with MDS?". MDS Life Beyond Limits - unavailable after April 2016. As of November 2017 it appears that Celgene still owns the domain name, but none of the information collected is currently available.