Michele Lipucci di Paoloa

Dr. Michele Lipucci Di Paola, scientist in Plant Biology at the University of Pisa (Italy). Since 1997 to 2006 Board Member and Former Vice-President EURORDIS, since 2002 Vice-President AVLT (Associazione Veneta Lotta alla Talassemia, Rovigo, Italy) , since 2006 Board Member PBSA (Pan-European Blood Safety Alliance), since 2000 Coordinator Research& Development and Director External Relations of THAL-LAB (Laboratory for the Development of Genetic and Pharmacogenomics Therapy of Thalassemia)/Center Biotechnology/University of Ferrara). Since 2003 to 2006 Member EMA/WGIP/COMP (European Medicines Agency/ Working Group Interested Parties/ Committee Orphan Medicinal Products), since 2009 Alternate Member.

EMA/CAT (European Medicines Agency/ Committee Advanced Therapy) representing patients' organizations. 'The promises that advanced therapies hold for the successful treatment of certain rare diseases are now closer to becoming a reality', argues Michele Lipuci Di Paola, recently appointed as the EURORDIS representative to the Committee. 'The creation of the CAT is the most important part of the process, because without it advanced therapy medicinal products could never reach the market.

A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases