MDS and You!

Visitors

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 is maintained by MDS DK Patient Support (MDS DK Patientstøtte).

MDS Alliance


Aplastic Anemia and MDS International Foundation (USA)

Aplastic Anemia & Myelodysplasia Association of Canada (Canada)

Asociacion Linfoma Mieloma y lecuemia (Spain)

Blodcancerförbundet (Sweden)

Connaître et Combattre les Myélodysplasies (France)

Hematon (Netherlands)


Lyle - Patientforeningen for Lymferkræft, Leukæmi og MDS (Denmark)


MDS DK Patientstøtte (Denmark) - Now a part of LyLe


MDS Foundation (USA)


MDS Ireland Support Group (Ireland)



MDS Net Deutschland e.V. (Germany)


MDS Patienten Interessen Gemeinschaft (Germany)

MDS UK Patient Support Group (United Kingdom)


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 my 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 support group homepage is 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/.

MDS Life Beyond Limits - unavailable after April 2016

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 travelled 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?".

As of November 2017 it appears that Celgene still owns the domain name, but none of the information collected is currently available.