Monday February 25th, 2019

Monthly Archives

Rare Disease Day 2019

For 2019 the association for rare diseases LIFE WITH CHALLENGES had different events in different cities.

In Bitola we organized an event on 21st of February, together with HEPAR Center Bitola, with the support of Center for Culture Bitola, Municipality of Bitola, and two high schools – Josip Broz Tito and Jane Sandanski.

We had a showing of the film “The Faces of Lafora”, where also the director Denis Bojik, was present for a discussion about the difficult life of families with rare diseases, for which there is no treatment available in the world.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

In Ohird, on 22nd of February, we also had a showing of the film “The Faces of Lafora” and after that we had a party where people were coloring their faces in support of rare diseases. The event was organized by Gordana Loleska and supported by the citizens of Ohrid.

In Skopje on 28th of February we supported the Macedonian association of medical students in organizing lectures for the students about rare diseases. 300 students  were in the audience. We are happy that so many are interested in rare diseases.

LIFE WITH CHALLENGES also supported the event organized by the National Alliance for Rare Diseases of Macedonia on 28th of February, with a goal to fight together for national strategy for rare diseases in Macedonia.


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