Saturday February 8th, 2014

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Conference for creating National Alliance for Rare Disease of R. Macedonia

  “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

 

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