Events for raising awareness on rare diseases, December, 2017

Events for raising awareness on rare diseases, December, 2017

Everyone for Jane, Raising awareness on SMA, December, Ohrid, 2017

In December, in Ohrid, the citizens organized by Gordana Loleska, managed to realize an event for raising awareness on Spinal Muscular Atrophy. As there is a drug approved and available but it is still not accessible for children in Macedonia. We hope that new medicines for different rare diseases will be available in 2018.

Football Game, elementary school, Skopje, December, 2017

The children from an elementary school in Skopje, Dimitar Miladinov, organized a football game to raise awareness on the problems and challenges of children with rare diseases. In the game there were also children with rare diseases, who played together.

Rare Disease Day Flag under water for New Year, December, 2017, Ohrid, Macedonia

For the 16th time, the members of the Dicing centre Amfora, and the Club for under water activities Ohrid, in cooperation with the Alliance for under water activities of Macedonia, decorated the Christmas tree under water in Ohrid lake, Macedonia. Traditionally as every year they decorated the tree in the lake at the Bay of Bones. Even the youngest members of the diving club participated in this activity.

Santa Clause race, Ohrid, December, 2017

In December, 2017 in Ohrid there was an event for New Year – a race of Santa Clause. Gordana Loleska made a cooperation with the organizers and at the end of the race people could take picture with the participants and the rare disease day flag to raise awareness on rare diseases.

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