Fostering Research on Rare Diseases
Home Conference Program

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
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)
(Reservation and booking at Registration desk; Price: 15 euro)


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