As part of the campaign "YOU ARE A RARE HERO", we are holding meetings with primary and secondary healthcare doctors across cities in our country.We are discussing the rare diseases they have diagnosed, the possibilities in terms of diagnosis, control, monitoring and therapy for patients, the challenges we face and future cooperation. We are sharing
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Discussion on gene therapy and an educational symposium on rare diseasesThe Citizens' Association for Rare Diseases LIFE WITH CHALLENGES Bitola is organising two consecutive events on March 12, 2025, at the "Raguza 360" Restaurant in Skopje. To better familiarise patients and their families with rare diseases and gene therapy, we organised a brief discussion and
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The EGA is delighted to announce that during its Biennial General Meeting in Zaragoza on 29 June, its members expressed their wish to amend the founding constitution by abolishing the differentiation between full and associate membership. With a voting result of 69% in favour of providing full rights to non-European member associations, the majority of
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On 3rd of December, our member Viktorija Penovska with the help of her school and her friends and family organized an event in her school focusing on the importance on accepting disability and the importance of social inclusion.
To mark the International Gaucher Day, the Macedonian association for rare diseases LIFE WITH CHALLENGES together with the Albanian association organized a meeting on 8-9 October in Struga, Macedonia. At the meeting we had families, patients, doctors and nurses connected to Gaucher disease type 1,2 and 3. Also we had representatives from Genzyme and Pfizer
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The Citizen Association for Rare Diseases “Life with Challenges” organized a round table on the topic of rare cancers in Macedonia at Best Western Hotel in Skopje on October, 28th , 2016. This activity was about raising the institutional and public awareness regarding the inaccessibility to treatment for patients suffering from rare forms of cancer
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