RARE DISEASES  PREVENTION, DIAGNOSIS, TREATMENT

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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