PRESS RELEASEConference on creating National alliance for rare diseases of R. Macedonia22 March (Saturday) 2014 hotel “Porta”, Skopje, R. Macedonia
The rare disease citizen association “Life with Challenges”-Bitola together with The Association for Hemophilia, rare coagulopathies and Von Willebrand- HEMOLOG and the Association for Emancipation, Solidarity and Equality of Women of Republic of Macedonia- ESE oranised
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PRESS RELEASEFirst CEI Conference on building Regional Network of Rare Disease Organisations23-24 March, Sunday-Monday, 2014, Hotel Porta,Skopje, R. Macedonia
The Rare Disease Citizen Association “Life with Challenges” has held the First CEI Conference on building regional network of Rare Diseases Organisations, on 23-24 March, 2014 in Skopje R. Macedonia.
This conference is a project that has brought
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“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
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Vesna Aleksovska, president of Life With Challenges, this year in October, become a member of the DITA Task Force (Drug Information, Transparency and Access) - EURORDIS.
The first meeting of the group was on 9th of December, 2013, in London.
Life With Challenges participated at the First National Conference for rare diseases in Serbia, Belgrade, 5-7 December, 2013 in the organization of the National Organization for Rare Diseases Serbia (NORDS). Vesna Aleksovska, was leading one of the the workshops for Strengthening Patient Leadership together with Vlasta Zmazek (Croatian Alliance fr Rare Diseases), Jelena Milosevik (NORDS),
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