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 don'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.

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

MDS Life Beyond Limits - unavailable af April 2016

If MDS patients do not have access to treatment then how can they live: Life Beyond Limits? The message of this campaign is, that treatment matters, also for older MDS patients.
Life Beyond Limits is a global health initiative that aims 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 can read stories from MDS patients in their own words. Get answers to questions such as "What is life like after being diagnosed with MDS?".

The website is available in Danish, English, Finnish, French, German, Italian, Norwegian, Portugese, Spanish, Swedish. 

This web-site was removed from the Internet around April 2016, and can now only be seen in the internet archieve.

MDS Foundation (USA)

The MDS Foundation supports MDS patients and research into MDS by arranging a triennial symposium on MDS as well a half day symposium the friday before the annual ASH meeting. They also arrange one day events for patients and relatives - mainly in the USA, but also internationally. MDS Foundation provides information for MDS patients in many languages.
The have a quite active online discussion forum for patients and relatives here.

MDS patient support groups sponsored by MDS Foundation

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. This group is sponsored by the MDS Foundation.

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/ , and they are sponsored by the MDS Foundation in the USA.

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/, and they are also sponsored by the MDS Foundation in the USA.

Japan MDS Patient Support Group (Japan)

There is also an MDS Patient Support Group in Japan. There website is http://www.mdssupport.net/, and they are sponsored by the MDS Foundation in the USA.

Aplastic Anemia and MDS International Foundation (USA)

The Aplastic Anemia & MDS International Foundation provide very informative webinars by doctors from major US MDS centers. These webinar is a good source of information about new developments in the treatment of MDS and what to look out for when selecting a place for your bone marrow transplant. You are free to attend the webinars from anywhere in the world. The provide information for MDS patients worldwide - in English.

Aplastic Anemia & Myelodysplasia Association of Canada (Canada)

The Aplastic Anemia & Myelodysplasia Association of Canada provides support for Canadian with bone marrow diseases. Support is provided in both official languages of Canada.

MDS Alliance

The MDS Alliance is a worldwide alliance of national MDS support and advocy groups. 
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.

Current members are AEAL, Asociación Española de Afectados por Linfoma, Mieloma y Leucemia from Spain, LHRM-MDS Patienten-Interessen Gemeinschaft from Germany, MDS UK Patient Support Group from United Kingdom, Aplastic Anemia and Myelodysplasia Association of Canada from Canada, Aplastic Anemia & MDS International Foundation from USA, MDS Foundation, Inc. from USA, CCM, Connaître et Combattre les Myélodysplasies from France, and The Leukaemia Foundation of Australia.

MDS DK Patientstøttegruppe (Denmark) - Merged with Lyle in April 2016.

 MDS DK Patientstøttegruppe provides information about MDS to patients and relatives in Danish. The group was established based on a grant from the MDS Foundation.

In April 2016 this support  group merged with Lyle in to have a greater impact at the political level both in Denmark and outside.  For the time being the group web-site dkpsg.mds-and-you.info continue to provide information and news for MDS patients in Danish.

Lyle (Denmark)

Lyle is an organisation, which primarily focus on patients with lymphoma and leukemia, but also provides services and information to other blood cancer patients including MDS.
Their homepage in Danish is http://www.cancer.dk/lyle/

In the spring of 2016 the Lyle board created a number of committees to assist with planning of theme meeting and publications. So beside a committee to assist the editor in chief of their two publications Lyle Focus and Lyle News, they also have three committees focusing on respectively Lymphoma, Leukemia and MDS. In addition there is a committee focusing on bone marrow transplants and donation.

Connaître et Combattre les Myélodysplasies (France)

Connaître et Combattre les Myélodysplasies (CCM) in France is properly one of the oldest patient organisations with a focus on MDS. There website in French is http://asso.orpha.net/CCM/cgi-bin/.

MDS Net Deutschland e.V. (Germany)

The MDS Net Deutschland provide information about MDS to German speaking patients and relatives. This group was established in 2012.
Their website in German is http://www.mds-net-de.org/.

Patienten Interessen Gemeinschaft (Germany)

MDS Patienten Interessen Gemeinschaft is another German organisation focusing on living with MDS. Their homepage in German is http://www.mds-patienten-ig.org/.
The website uses pictures taken by American photographer Ed Kashi as part of the MDS Life Beyond Limit initiative on living with MDS.

MDS Ireland Support Group (Ireland)

A support group in Ireland called MDS Ireland Support Group was established in 2012.

Hematon (Netherlands)

Hematon patiëntenorganisatie bloedkanker, lymklierkanker stamceltransplantie provide services to all bloodcancer patients, including MDS.
Their homepage in Dutch is http://www.hematon.nl/.

Asociacion Linfoma Mieloma y lecuemia (Spain)

Asociacion Linfoma Mieloma y lecuemia in Spain also serves all bloodcancer patients including  MDS patients. Their homepage in Spanish is http://www.aeal.es/.

Blodcancerförbundet (Sweden)

Blodcancerforbundet in Sweden is a swedish organisation for all patients with a bloodcancer illness including MDS. Their homepage in Swedish is http://www.blodcancerforbundet.se/.

MDS UK Patient Support Group (United Kingdom)

The MDS UK Patient Support Group is like the most active in Europe on all fronts: Patient events, Political influence and fund raising.
Their discussion forum is quite active, and is available here.