We marked the international Rare Disease Day in our local community on Wednesday, 27th February, 2019, a day in advance. Seven students from our Class 1A, accompanied by their teacher, Ms Ivana Sabljak, and the school social pedagogist, Ms Jadranka Bašić Parić, took a walk through the streets of our neighbourhood, the Stjepana Pasanca Street, the Sokolska Street and the Zagrebačka Road, carrying red balloons. We handed out leaflets with information about rare diseases to passers-by.
A disease or disorder is defined as rare when it affects fewer than 5 in 10,000. It is estimated that there are between 7,000 and 8,000 different kinds of rare diseases in the world. In about half the cases, the symptoms start in childhood, and the quality of life is often greatly reduced by the lack or loss of independence. Also, there are great difficulties in establishing the right therapy because it is hard to get the correct diagnosis due to the general lack of information and experience, and because the therapy and medicine for such conditions are very expensive.
After an hour of walking the neighbourhood streets, we returned to school, feeling rewarded by the new experience and the impact of our activity on those we encountered
On Saturday, 9th March, we joined the march through the centre of Zagreb, organised for the first time this year. The organisers of “the march with red balloons” is the Angels Association – the association of parents of children with the most serious disabilities and children with developmental difficulties. We came together carrying red balloons in Preradović Square and gave our support to this worthy cause with the goal to promote the awareness of children with special needs in the public.
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