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