Organization of a patient meeting for Gaucher families and doctors from Albania and Macedonia, 8-9 October, 2016
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 […]
Round table on rare cancers, 28th of October, 2016, Skopje, Macedonia
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 […]
FIFTH MEETING OF SEE FOR RARE DISEASES, ON 12 NOVEMBER, 2016
The Macedonian Academy for science and art had the opportunity to organize the fifth meeting of SEE for rare diseases, on 12th November, 2016. In the organizational committee of this meeting are: Momir Polenakovic, President, Zoran Gucev, Secretary, Nada Pop-Jordanova, Ilija Filipche, Zivko Popov, Velibor Tasic,Aspazija Sofijanova, Vesna Aleksovska, Dijana Plaseska Karanfilska The program was […]
Rare Disease Day Flag under water for New Year, 25 December, 2016, Ohrid, Macedonia
For the 15th 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 […]
Postal stamp for rare diseases
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. […]
Skope Night Running RUNS for LIFE WITH CHALLENGES
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, […]
RARE DISEASE DAY 20.02.2016 Macedonia
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, […]
Exhibition – Lysosomal storage diseases – International Gaucher Day
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 […]
Climbing Golem Korab, 2015
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 […]
Embrace rarity
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 […]