Last year a member of the association for rare diseases Life with challenges, a mother with a child with Alport syndrome, Gordana Loleska, employed in the post office in Ohrid, started an initiative for creating a postal stamp with the logo of rare disease day to help in raising awareness for rare diseases in Macedonia.
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The association of citizens for rare diseases LIFE WITH CHALLENGES continues with the tradition to participate on Skopje Marathon. This year the association Moment Plus from Gevgelija is also participating in the marathon.
On 8th of May, 2016, 60 participants from Skopje Night Running will run for Life With Challenges on 21 and 42 kilometers, and
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On the occasion of the World Rare Disease Day 2016, the National Alliance of Rare Diseases of Macedonia organized an event to mark the occasion on 29 February (Modnay) in the cinema Frosina- MKC. In the course of the Friday, Saturday and Sunday prior to the 29th , events were as well organized in Ohrid,
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On 24.09.2015 at Kinoteka - Macedonia, we opened the First travelling regional exhibition of photos with subject - lysosomal storage diseases. This exhibition shows life of patients and their families from Croatia, Serbia, Macedonia and Bosnia and Herzegovina. Lysosomal storage diseases are group of rare diseases that is consisted from more than 45 hereditary metabolic
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The Association of citizens for rare diseases LIFE WITH CHALLENGES is continuing the tradition of climbing the highest mountain top in Macedonia - Golem Korab in 2015.
For 8th of September, the Independence day of R. Macedonia, traditionally the Association Korab organized the Climbing of Golem Kkorab, the highest mountain top in Macedonia. The flag of
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This exhibition was prepared for Rare Disease Day, 2015, from the platform for activism "Lice v Lice", in cooperation with "Holistic", the Association of citizens for rare diseases Life With Challenges and the National Alliance for Rare Diseases of R. Macedonia.
Ognen Janeski and Azemina Kurtishi
“Rocketing”
Azemina is the first patient with a diagnosed rare disease Gaucher
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