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International Day of Rare Diseases
Serbia will celebrate for the first time 28 of February as an International Day of Rare Diseases. European organisation for rare diseases – EURORDIS – established this Day in 2008 with aim to raise awareness on rare diseases, their consequences and barriers persons with this diseases faced with.
Due to this Day, National Organisation of DPOs in Serbia with Ministry for Labor and Social Policy and Association of Dystrophics of Belgrade organise press conference on Friday, 27 of February. Conference speakers will be representative of the Conference organisers.
Rare disease is the one which incidence is less than on on 2 000 persons, but it is neccessary to point out that there is a line of diseases which incidence is one on several hundreds of thousands or even one in few million citizens. It is estimated that there are between 5.000 and 8.000 rare diseases in the world today, that influence on physical and mental abilities (muscular dystrophy, cerebral paralyse, hepatitis B and C, autism, blood cancer, existing in Serbia as well. Every week it is discovered five more rare diseases.
Some of common characteristics are the facts that public awareness of rare diseases is very low, that 80% of their has genetic code, that at 50% of diseases first symptoms appeares at birth or in early childhood, that the wrong diagnoses are very often as well as inadequate therapies which has bad impact not just on persons suffer from these diseases but also on their families. Most of these diseases has permanent disability as final result and persons suffer from that diesases have need for high level of social support and very often feel isolated and excluded from the society.
Special Advisor for International Disability Rights
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IMPORTANT DAYS TO CELEBRATE
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The U.S. Embassy has a pleasure to invite you
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