3rd MEETING ON RARE DISEASE IN SOUTHEASTERN EUROPE

• Main Author: Ana PETKOVSKA
• Format: Article
• Language: English
• Published: Faculty of Philosophy, Institute of Special Education and Rehabilitation 2015-11-01
• Series: Journal of Special Education and Rehabilitation
• Subjects: MASA; rare diseases; Macedonia; Southerneastern Europe
• Online Access: http://jser.fzf.ukim.edu.mk/files/2015(1-2)/127-129%20Ana.pdf
• ISSN: 1409-6099; 1857-663X

On November 15th, 2014, at the Macedonian Academy of Science and Art (MANU), the third conference on rare diseases in Southeastern Europe was held. The conference was officially opened by Prof. Dr. Zoran Guchev who welcomed the participants and wished them successful work. The First Lady of the Republic of Macedonia, Mrs.Maja Ivanova had her welcomed speech, who is also the patron of the association for rare diseases ,,Life with Challenges“ and for two years in a row she was awarded the title of European honorary patron of the European Association for rare diseases EURORDIS from Brussels. With her inclusion in the community, Ivanova took a significant commitment in the field of rare diseases at nationaland European level. Ivanova called for support of the initiative to declare 2019 the European Year of rare diseases, when it will be the 20th anniversary since the adoption of the Regulation of the European Union for medical products for rare diseases and 10th since the recommendation of the European Council for more activities in the field of rare diseases. The director of the Research Center for Genetic Engineering and Biotechnology ,,G.D. Efremov“ the academician Momir Polenakovic stressed the need for National plan for rare diseases, because so far there is no standardized approach for rare diseases. Also, there is no developed awareness and measuring of the treatment.