The Macedonian Academy for science and art had the opportunity to organize the fifth meeting of SEE for rare diseases, on 12th November, 2016.
Int he organizational committee of this meeting are: Momir Polenakovic, President, Zoran Gucev, Secretary, Nada Pop-Jordanova, Ilija Filipche, Zivko Popov, Velibor Tasic,Aspazija Sofijanova, Vesna Aleksovska, Dijana Plaseska Karanfilska
The program was as it follows:
09.15-09.30 Stefan Chichevaliev, Vesna Aleksovska, Skopje Macedonia, Policies, practices and their impact on the quality of life of people with rare diseases
09.30–09.50 Momir Polenakovic, Skopje, Macedonia, Rare genetic kidney diseases
09.50-10.15 Milosevic Danko, Zagreb, Croatia, Atypical hemolytic-uremic syndrome (aHUS) in Croatian children
10.15-10.40 Zoltan Prohaszka, Hungary, Overview of complement deficiencies
10.40-11.10 Milan Lakocevic, Belgrade, Serbia, Enzyme Repleacement treatment: Serbian experience with taliglucerase alfa
11.10-11.40 Adrijan Sarajlija, Belgrade, Serbia, Glycogen storage diseases – single center experience
11.55-12.20 Johannes A. Mayr, Salzburg, Austria, Mitochondrial diseases – Are they rare or common?
12.20-12.45 Velibor Tasic, Skopje, Macedonia, Pitt Hopkins syndrome an update
12.45-13.10 Zoran Gucev, Skopje, Macedonia, The spectrum of growth disorders: the Macedonian part
13.10-13.35 Rossella Parini, Milan, Italy, Mucopolisacharidosis: diagnosis and treatments
Session II – Moderators: Ilija Filipce, Velibor Tasic, Zivko Popov
14.10-14.40 Hans Joachim Seitz, Hamburg, Germany, Endocrine Disruption as cause of (rare) diseases
14.40-15.10 Oliver Bartsch, Mainz, Germany, Next generation sequencing in pediatrics (in Germany)
15.10-15.35 Jan Halbritter, Leipzig, Germany, Mutation analysis in kidney stone disease
15.50-16.05 Zlate Stojanovski, Skopje, Macedonia, Polycythemia rubra vera in patient with Gaucher disease
16.05-16.25 Liljana Saranac, Nish, Serbia, Microprolactinoma in childhood and adolescence; a rare or underestimated disease
16.25-16.45 Zoran Gucev Skopje, Macedonia, M.Gaucher: treatment
