First Day
(08 September 2006)

Venue: Hall “Bulgaria”, Congress Centre of the International Plovdiv Fair (Pavilion 8, fl. 2.)


08:30-17:30	REGISTRATION

09:00-11:00	PRE-CONFERENCE MEETING with patient representatives (EURORDIS – ICRDOD collaboration activity)
10:30-11:30	Press-conference

12:00-12.30	OPENING OF THE CONFERENCE Expected speeches by the Minister of health of Bulgaria, Mayor of Plovdiv and Rector of the Medical University of Plovdiv

12:30-17:30	PANEL SESSION

12:30-12:50	Rare diseases management: role of the non specialist Prof. Segolene AYME (ORPHANET, France)
12:50-13:10	The US Orphan Drug Act: Benefits to Patients, Benefits to Community Dr. Marlene E. HAFFNER (FDA, USA)
13:10-13:30	Research on rare diseases: support through the EU Framework Programmes Dr. Catherine BERENS (European commission)
13:30-13:50	Orphan medicines in the European Union Prof. Josep Torrent Farnell (COMP, EMEA)
13:50-14:10	The Italian National Network for Rare Diseases Dr. Domenica TARUSCIO (ISS, Italy)
14:10-14:30	Rare diseases in the context of the National Health Strategy of Bulgaria Dr. Matei Mateev, MD - vice minister (Ministry of Health, Bulgaria)
14:30-14:50	Encouraging research for rare diseases: the role of EURORDIS Mrs. Christel NOURISSIER (EURORDIS, France)
14:50-15:10	An example of regional network on rare diseases Dr. Erica Daina (“Mario Negri”Institute, Italy)

15:10-15:40	COFFEE BREAK

15:40-16:10	Challenges and perspectives in the development of a therapy for Pompe disease Dr. Khazal Paradis (Senior VP Clinical Research Europe, Genzyme B.V.) – sponsored session
16:10-16:30	Clinical development of Pompe patient treated with Myozyme Prof. Anna Tylki-Szymanska (Instytut "Pommik-Centrum Zdrowia Dziecka", Poland) – sponsored session
16:30-16:50	Mitochondrial diseases Dr. Radka Tincheva, PhD (Bulgaria)
16.50-15.10	Rare neurological diseases, starting in childhood Prof. Veneta Bojinova, PhD (Bulgaria)
17:10-17:30	ICRDOD activities on rare diseases Prof. Rumen Stefanov (ICRDOD, Bulgaria)

20:00	GALA DINNER (Reservation and booking at Registration desk; Price: 15 euro)

First Day (08 September 2006)

First Day
(08 September 2006)