TOGETHER FOR INTEGRATIVE APPROACH TO RARE DISEASES

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First day
(13 June 2009)*

*Since the official language of the event is English, all the information about the conference sessions and workshops will be available only in English!


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

This conference arises from the project "4th Eastern European Conference for Rare Diseases and Orphan Drugs - Together For Integrative Approach To Rare Diseases" which has received funding from the European Union, in the framework of the Public Health Programme.

First day (13 June 2009)*

First day
(13 June 2009)*