The MDS Alliance is an umbrella organization of
national Myelodysplastic Syndromes (MDS) patient
organizations worldwide. The mission of the MDS Alliance
is to better serve the MDS patient and caregiver
communities globally. The MDS Alliance would like
to introduce the Here to Help campaign
which has been created to raise awareness of MDS.
Visit the MDS Alliance website to find your local MDS organization which can support you,
and your carers, in the battle with your MDS. Or if you belong to an established or
emerging MDS organization, visit the MDS Alliance website to find the resources,
relationships and support your organization needs to raise awareness of the disease and
awareness of your organization.
MDS are a group of very rare blood disorders which disrupt the production of normal,
healthy blood cells by the bone marrow.
MDS is sometimes known as bone marrow failure. In patients with MDS, their bone marrow
is overactive and produces high numbers of abnormal blood cells and blast cells. These
normally die quickly and the number of healthy, functioning cells in the blood stream
decreases. Blast cells are immature cells that later develop into red blood cells (RBCs),
white blood cells (WBCs) or platelets.
RBCs – these transport the oxygen you breathe around your body to your different
muscles and organs
WBCs – these are your immune cells that fight off infection by viruses, bacteria and
parasites
Platelets – these are small, colorless fragments of cells which clump together to form a clot
and stop bleeding when a blood vessel is injured
Symptoms of MDS include: weakness, tiredness and occasional breathlessness due to low
levels of RBCs and oxygen; frequent coughs, colds and other infections due to low levels
of WBCs; and easy bruising and bleeding due to low levels of platelets.
The MDS Alliance began with six founding member patient advocacy organizations which now form the leadership group and provide guidance and direction to the Alliance.
The Aplastic Anemia & Myelodysplasia
Association of Canada
(AAMAC)
The Aplastic Anemia
and MDS International
Foundation
LHRM-MDS Patienten-
Interessen
Gemeinschaft
MDS UK Patient
Support Group
AEAL, Asociación
Española de Afectados
por Linfoma, Mieloma
y Leucemia
The MDS Foundation
The MDS Alliance would like to thank Celgene and Novartis for their support.
© MDS Alliance 2024 | www.mds-alliance.org | www.heretohelpmds.com
The application is divided into 2 main areas:
1. Overview
2. Details
1. Overview
For each country for which data is already available there is an
icon on the world map. 
Clicking on an icon opens a window with a country-specific country-specific overview of MDS therapies and their availability, authorisation and and reimbursement.
This overview is interactive and detailed information is displayed by moving the mouse. Under the country name there is a (pink) reference to the health insurance system (if known) in this country.
Ten possible MDS therapies are listed below. In front of each therapy are 3 coloured dots. If you move the mouse over one of the dots, further explanatory information appears.
The first dot shows the availability in a country. Red stands for not available, green for available. Yellow means conditional availability and a grey question mark means “no information”.
The second dot indicates the marketing authorisation for MDS in the respective country. Red stands for not authorised, green for authorised and yellow for e.g. not yet authorised but available as part of a study or off-label.
The third point indicates whether the costs will be covered by the healthcare system: red indicates no cost coverage, green indicates cost coverage and yellow indicates conditional cost coverage, e.g. only in characteristic cases if other therapies were not successful.
The map can also be displayed on mobile devices, but the detailed information (mousover) cannot be displayed.
2. Detail
Information for each individual therapy can be called up on the detailed map and displayed in the individual colours on the world map. This makes it possible to determine at a glance the access options for a therapy in all the countries covered.
To do this, select a therapy from the selection bar:
After selecting a therapy, the availability of a therapy is displayed in colour for each country (red stands for not available, green for available. Yellow means conditional availability and a grey question mark means “no information”). If a country is not highlighted in colour, no information has yet been determined.
In the top right-hand corner there is a button to show the show the layer menu:
By ticking the checkbox, the other levels Market authorisation and Cost absorption can be shown or hidden. The access options per country are also indicated here by the colours.
Market approval: (red = not approved, yellow = conditionally approved, e.g. for other diagnoses, green = approved, grey = no information found)
Cost coverage: (red = no cost coverage, yellow = partial cost coverage, green = general cost coverage, grey = no information found)
