Academic journal article The Journal of Special Education and Rehabilitation

3rd MEETING ON RARE DISEASE IN SOUTHEASTERN EUROPE

Academic journal article The Journal of Special Education and Rehabilitation

3rd MEETING ON RARE DISEASE IN SOUTHEASTERN EUROPE

Article excerpt

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3rd MEETING ON RARE DISEASE IN SOUTHEASTERN EUROPE

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.

The director of the Children's Clinic, Prof. Dr. Aspazija Sofijanova, in her speech said that according to the statistics, in every 2000 people in the world there is one with a rare disease. It is estimated that 350 million people have one of those rare diseases. From the current 7000 various existing rare diseases, there is anadequate therapy only for 5 percent of them. She added that this year, the Commission on rare diseases in Macedonia aims to formulate a registry for patients to determine the exact needed therapy and supplements for the patients. The most common rare disease in Macedonia is the Gaucher disease. 13 patients are in fected with this disease, seven of them are children.

The conference was divided into two sessions. …

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