Extremely difficult to diagnose, with an unpredictable course and the danger of progressing rapidly into leukemia, myelodysplastic syndromes are a challenge for those afflicted, as well as for the physicians treating them. In the absence of a national registry, accurate statistics cannot be made, the actual status of this disease in Romania is unknown (prevalence, incidence, life expectancy, etc.) and thus an effective representation of the interests and needs of these patients is difficult to establish.
Because we want to do everything we can to improve the quality of life for patients with MDS, we are launching MDS in Romania – a project with national impact through which we aim to create a record of all the patients in Romania that have been diagnosed with MDS. With each entry in the association’s database we will be one step closer to understanding where MDS stands in Romania and what is the best strategy to address individual and group needs, respectively.
It is our conviction that a solidary community thus formed will act as a support system and means of communication, resources which will make each of us stronger in the battle against disease.