TOGETHER FOR INTEGRATIVE APPROACH TO RARE DISEASES
Langue: Bulgare Anglais Français Allemand Russe

Premier jour
(13 juin 2009)*

*Puisque la langue officielle de l'événement est l'anglais, le programme de la conférence sera publié seulement en anglais!

08:00-10:00 REGISTRATION
10:00-10.30 OPENING CEREMONY
Expected official guests: Mrs. Zorka Parvanova - First Lady of Bulgaria, Dr. Evgeniy Zhelev - Minister of Health, Members of the Parliament
10:30-12:30 SESSION 1
Policy on rare diseases
Moderators
: Rumen Stefanov, Stephanie Donahoe, Domenica Taruscio
Presentation duration: 20 minutes
Catherine Berens (click to read as PDF)
DG Research
Stephanie Donahoe (click to read as PDF)
FDA/USA
Domenica Taruscio (click to read as PDF)
EUROPLAN
Christel Nourissier (click to read as PDF)
EURORDIS
Karin Blumer (click to read as PDF)
Joint EBE-EuropaBio Rare Diseases & Orphan Medicinal Products Task Force
Rumen Stefanov (click to read as PDF)
BAPES
12:30-13:00 Press Conference
12:30-13:30 Lunch Break
13:30-17:00 SESSION 2
Sharing best practices on integrative approach on rare diseases in different countries
Moderators: Domenica Taruscio, Catherine Berens, Sonja van Weely, Iva Stoeva
Presentation duration: 10 minutes
Armenia (click to read as PDF)
Anahit Petrosyan
Bulgaria (click to read as PDF)
Radka Tincheva
Croatia (click to read as PDF)
Mirando Mrsic/Natasa Bijelic
Czech Republic (click to read as PDF)
Sarka Vejvalkova
Greece (click to read as PDF)
Vasilios Berdoukas
Hungary (click to read as PDF)
Janos Sandor
Italy (click to read as PDF)
Domenica Taruscio
Macedonia (click to read as PDF)
Mirjana Kocova
The Netherlands (click to read as PDF)
Sonja van Weely
Poland (click to read as PDF)
Grzegorz Wegrzyn
Coffee Break
15:00-15:30
Romania (click to read as PDF)
Dorica Dan
Russia (click to read as PDF)
Alexey Sokolov
Serbia
Milan Terzic
Slovenia (click to read as PDF)
Borut Peterlin
Turkey (click to read as PDF)
Ugur Ozbek
UK (click to read as PDF)
Edmund Jessop
General Discussion
17:00-19:00 PARALLEL WORKSHOPS:
Workshop 1 - Central and Eastern European (CEE) activities (part 1)
Moderators:
Iva Stoeva, Natasa Bijelic, Borut Peterlin

Workshop 2 - Integrative management of rare diseases
Moderators:
Domenica Taruscio, Ivan Ivanov, Elisaveta Naumova, Edmund Jessop

Workshop 3 - Access to orphan drugs in CEE countries
Moderators:
Stephanie Donahoe, Rumen Stefanov, Tsveta Milanova

Workshop 4 - Rare tumors
Moderators:
Asen Dudov, Aydin Dortok
20:00 GALA DINNER FOR ALL THE PARTICIPANTS

 


Cette conférence fait partie du projet "4th Eastern European Conference for Rare Diseases and Orphan Drugs - Together For Integrative Approach To Rare Diseases", qui est financé par l'Union Européenne dans le cadre du programme de Santé Publique.
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