Learning about rare diseases
01 February 2019 - 28 February 2019
Bitola, Ohrid, Gostivar, Skopje, Macedonia
Hosted by Association of citizens for rare diseases LIFE WITH CHALLENGES Bitola
We are learning about rare diseases: 28 days in February for 28 rare diagnosis:
Super Radio, Gordana Loleska and LIFE WITH CHALLENGES this February will share information about rare diseases in R. Macedonia. This is just hoping to learn more and be informed. The information in video, audio and text will be shared on national, regional and local media (televison, radio, web portals ... social media)
In February, the month that patients with rare diseases call it rare month, we will try to educate about 28 different rare diseases. The statistical data about rare diseases in Macedonia is not yet official as the registry is a work in progress. We estimate that there are over 2000 patients that face life with a rare disease in Macedonia with over 100 different diagnoses.
let’s try and learn the challenges and problems around diagnosis, treatment, disease management, access to orhpan drugs …
Additionaly we will have a projection of the film "The Faces of Lafora" , on the 21st of February in Bitola, 18.00h, Center for Culture, and in Ohrid, 22nd of February, 18.00h.
Before projection of the film, we will have a press conference and a discussion witht he director of the film. Families with rare disease will be invited to participate in the events.
In the mean time we encourage everyone to color their faces and share on social media their support for rare diseases. While being guests at morning shows and the news we insist on colors :)
Josif and Nebosjha from Gostivar will make a video with famous people coloring their faces in support of rare diseases which also will be shared on social media.