“Conference for establishing National Alliance for Rare Diseases of R. Macedonia“, on 22nd of March, 2014 in Skopje, Macedonia
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Agenda |
22nd of March, 2014, Hotel Porta, Skopje, R. Macedonia |
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09:30 – 11:00 h. |
Opening of the conference – media statements |
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Borjan Pavlovski, Coordinator of the program for Public Health and women’s health at the Association for Emancipation, Solidarity and Equality of Women in R. Macedonia |
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Mary Jo Wohlers, USA Embassy in Macedonia/ Honorary Member of the Association of citizens for rare diseases Life With Challenges – Bitola |
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Assoc. Prof. Elena Kosevska, MD, Ph.D. Specialist for Social Medicine, Institute for Public Health of the Republic of R. Macedonia, Head of Department for Health Promotion, Analysis and NCD Prevention |
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Branko Adzigogov, Health Insurance Fund of Macedonia, Importance of cooperation with patient organizations |
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Vesna Aleksovska, President of the Association of citizens for rare diseases Life With Challenges – Bitola |
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Cveta Nakeska, Founder and Member of the Executive Board of HEMOLOG (Bleeding Disorder Society of Macedonia) |
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Speeches from representatives from associations that are creating the alliance |
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11:00 – 11:15 h. |
Coffee Break |
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11:15 – 13:00 h. |
Discussion about the meaning and work of the alliance Moderators – Borjan Pavlovski and Marija Gelevska, ESE |
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Voting on statute, mission and vision, objectives, work program, responsibilities and benefits, board of directors. |
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Signing memorandum of cooperation, decision for official founding of the alliance, voting for the Board of directors of the alliance |
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13:00 – 14:00 h. |
Lunch Break |
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14:00 – 15:30 h. |
Discussion about the National Plan for Rare Diseases in Macedonia |
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Vesna Aleksovska, President of the Association of citizens for rare diseases Life With Challenges – Bitola: Presentation of the National Plan for Rare Diseases – R. Macedonia |
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National Plans for Rare Diseases in the Balkan Region |
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Davor Duboka, Executive Director of the National Organization for Rare Diseases, Serbia: Presentation of the National Plan for Rare Diseases – Serbia |
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Vladimir Tomov, President of the National Alliance of People with Rare Diseases, Bulgaria: Presentation of the National Plan for Rare Diseases – Bulgaria |
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Borislav Djuric, President at the Association for Rare Diseases: Presentation of the National Plan for Rare Diseases – Bosnia and Herzegovina |
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Vlasta Zmazek, EUROPLAN Advisor: Presentation on EUROPLAN |
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15:30 – 16:00 h. |
Evaluation of the conference, closing of the day |
