Conference Program
Supported by:
Main Sponsor
Sponsor
First Day
(1 March 2008)
| 10:00-12:30 | REGISTRATION |
| 12:00-12:30 | Press-conference |
| 12:30-13.00 | OPENING OF THE CONFERENCE Expected speeches by the Minister of health of Bulgaria |
| 13:00-15:00 | PANEL SESSION Rare diseases and orphan drugs - EU policy and best practices |
| 13:00-13:15 | Research on Rare Diseases: the EU Framework Programmes Dr. Catherine Berens (DG RESEARCH, European commission) |
| 13:15-13:30 | A Commission Communication on Rare Diseases - update on the public consultation Dr. Karl Freese (DG SANCO, European commission) |
| 13:30-13:45 | Orphan drugs policy in EU Dr. Kerstin Westermark (COMP, EMEA) |
| 13:45-14:00 | Classification of genetic diseases for communication purpose between clinicians and
biologists: New tools provided by Orphanet Dr. Katia Marazova (ORPHANET) |
| 14:00-14:15 | Management of rare diseases in the Netherlands Dr. Sonja van Weely (Steering Committee of Orphan Drugs, Netherlands) |
| 14:15-14:30 | Management of rare diseases in Italy Dr. Domenica Taruscio (National Centre for Rare Diseases, Italy) |
| 14:30-14:45 | Perspectives for national policy on rare diseases in Bulgaria Dr. Rumen Stefanov (Information Centre for Rare Diseases, Bulgaria) |
| 14:45-15:00 | Obtaining the diagnosis and gaining access to research studies and available treatments Dr. Stephen Groft (Office for Rare Diseases, NIH, USA) |
| 15:00-15:30 | Coffee break and poster session |
| 15:30-16:45 | SPONSORED SESSION |
| 15:30-15:45 | Gaucher Disease: From the early idea to Cerezyme and beyond Dr. Tarek Ebrahim (Associate Director, Genzyme) |
| 15:45-16:00 | Our 7 year experience of treating patients with Gaucher disease Dr. Radka Tincheva (University Pediatric Hospital, Bulgaria) |
| 16:00-16:20 | Imatinib (Glivec) - a story of dedication and success Assoc. Prof. Georgi Mihailov (National Center of Haematology and Transufusiology, Sofia, Bulgaria) |
| 16:20-16:45 | Development of Chelation therapy - from Desferal (deferoxamine) to Exjade (deferasirox) Assoc. Prof. Valeria Kaleva (MBAL "St. Marina" Varna, Bulgaria) |
| 16:45-18:15 | SCIENTIFIC SESSION 1 Moderated by Prof. P. Stamenova, Prof. V. Bojinova, Dr. Catherine Berens |
| 16:45-16:55 | Increasing rare diseases awareness among medical professionals Yordanova R, Igarenska M, Stefanov R (presented by a medical student) |
| 16:55-17:05 | Awareness about rare diseases among medical students in Bulgaria Beleva E, Yordanova R, Arizankoski D, Stefanov R (presented by a medical student) |
| 17:05-17:15 | Merkel cell carcinoma Haralampiev E, Shipkov CD (presented by a medical student) |
| 17:15-17:25 | Craniofacial clefts Ivanov B, Shipkov CD, Anastasov J (presented by a medical student) |
| 17:25-17:35 | Chromosome aberration associated with epilepsy - grequency and features Ivanov I, Stefanova M, Stoeva R, Pacheva I |
| 17:35-17:45 | Development of Immunology Research Centre in Medical University-Plovdiv" -
a project grant by Bulgarian Ministry of Education and Science (Are we closer to better diagnostics of some rare diseases?) Murdjeva M |
| 17:45-17:55 | TREAT-NMD: An overview of the Network Heslop E |
| 17:55-18:05 | Rare eye trauma complications Christova R, Dabov D, Shumnalieva V, Petrova H |
| 18:05-18:15 | Prader-Willi syndrome- diagnosis, clinical picture and treatmant Tincheva R |
| 18:15-18:30 | Discussion |
| 20:00 | GALA DINNER (Reservation and booking at Registration desk; Price: 15 euro) |
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