On the occasion of the 12th World rare diseases Day, the Arab-German Young Academy of Sciences and Humanities organized an event aiming at raising the public awareness about rare diseases and their particularities in Tunisia, as well as all over the world. This event was organized in partnership with the Tunis Science City, Pasteur Institute of Tunis, the Tunisian Association of Young Researchers of Pasteur Institute of Tunis, Research in Action Institute and the European project InSPIRES.
The programme included lectures which were given by health professionals (doctors and researchers) on Thursday, February 28th, 2019 at Pasteur Institute of Tunis from 9.00 am to 3.00 pm. The lectures were followed by a round table gathering national leaders and representatives from different Arab countries, in order to discuss the different steps to take and the major challenges related to rare diseases and ensure a better knowledge and care about these affections.
On Friday, March the 1st, the Tunis Science City opened its doors to the public from 9.00 am to 8.00 pm in order to raise their awareness about these issues. The programme included lectures, as well as testimonies of persons attained with rare diseases who talked about the difficulties they face during their everyday life. It also included workshops at the DNA laboratory. The day ended with a concert which was given by the orchestra of El Manar music conservatory, and exhibitions made by students of the Higher Institute of Fine Arts representing sculptures tackling the theme of rare disesaes. The best sculptures were rewarded. Other competitions dedicated to pupils of basic and secondary schools will be organized.
On Saturday, March the 2nd, the DNA laboratory opened its door and included workshops and representations relative to genetics and molecular biology.
A disease is called “rare” when it affects one person among 2000. About 8000 rare diseases are identified in the world and 80% of them have genetics origins. Environment factors are not excluded. In Tunisia, more than 400 diseases of genetics origins are mainly caused by intermarriages. This consequently multiplies the risks of rare disease appearance.
