Rare cancers are not so rare
More then 3.5 million people suffering from oncological diseases, 700 00 of which are rare cancers. Every year 600 000 new tumours are diagnosed, of which 126 000 are rare. According to WHO there are 198 rare pathologies. This is more than 20% of all tumours...
About Us
Rare Cancers Society was founded in 2020, as an organisation of united partners, whose mission is to study, develop educational programmes for specialists & patient communities, connected to this medical area to improve treatment & patients' quality of life.
Creation of "Political recommendations" - "call to actions" on rare oncological treatments conferences, conducted by a group of specialists in that area.
Aid in creation of patient organisations for patients with rare oncological illnesses
Aid in creation of public organisations dedicated to lobbying interests of rare cancer patients on government level.
Creating a list of experts & board of trustees who signed a petition for rare oncological disease problem actualisation .
Statistics & difficulties:
Diagnosis difficulties
Difficulty in diagnosis slows down the begining of treatment.
Lack of medicine
Lack of effective medication caused by absence of big clinical studies.
Lack of Interest
Lack of interest in developing new effective medications from Pharma companies is caused by population restrictions on commercial markets.
Lack of Data
Lack of statistical data caused by absence of a database with all rare oncology patients.
Weak development of biobank systems in the country.
Lack of qualified specialists in rare oncology diseases area & absence of reference centres in the country.
Low level of interest in rare cancer patients' problems on behalf of the government, due to lack of data on such patients & media coverage.
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