Full program
TUESDAY, MARCH 6th
2018 E-RARE, Membership meeting (closed), all day 9 to 17
WEDNESDAY, MARCH 7th
Special morning sessions 9 to 12:
- Parallel session 1: Undiagnosed Diseases Network International (UDNI) – Chair Domenica Taruscio
- Parallel session 2: European Reference Networks (ERNs), where we stand? – Chair Luca Sangiorgi
A. Session, Afternoon 14 to 17 “Opportunities in rare diseases around the world”
- Maurizio Scarpa, DE: European References Networks (ERNs)
- Hugh Dawkins, AU: IRDiRC and RD Connect
- Daria Julkowska, FR: E-RARE and European Joint Programme
- Olivier Menzel, CH: RE(ACT) Community
- BBMRI, UDNI, Solve RD
POSTER SESSION A 17 to 18
Public Opening Ceremony 18 to 20
Welcome message
Professor Silvio Garattini, IT, pioneer in rare disease research, professor in chemotherapy and pharmacology and director of the Mario Negri Institute for Pharmacological Research.
Professor Harvey F. Lodish, USA, professor at the Massachusetts Institute of Technology (MIT), Founding Member of the Whitehead Institute for Biomedical Research and lead author of the textbook Molecular Cell Biology. “Academic Entrepreneurs, New Technologies, and Building Companies to Treat Rare Diseases”
THURSDAY, MARCH 8th
B. Session, Morning 9 to 12 “NGS and undiagnosed rare diseases”
- Xavier Estivill, ES
- Marco Gattorno, IT “Impact on NGS in daily practice in autoinflammatory diseases”
- Nicolas Lévy, FR
- Vincenzo Nigro, IT
- Lisenka Vissers, NL “The circle of NGS innovation: from research to diagnostics and back”
Lunch 12 to 13
POSTER SESSION B & C 13 to 14
C. Session, Afternoon, 14 to 17 “Pathophysiology”
- Gregor Andelfinger, CA
- Kristina Hettne, NL
- Roman Chrast, SE “The role of endoplasmic reticulum-mitochondria crosstalk in axonal maintenance”
POSTER SESSION B & C 17 to 19
FRIDAY, MARCH 9th
D. Session, Morning 9 to 12 “Gene and cell therapy”
- Peter Lenting, FR “Small Antibody Fragments as Alternative Tools in Haemophilia Care”
- Luigi Naldini, IT
- Josef M. Penninger, AT “Haploid stem cells – from discovery to a library of repairable mutations for reproducible research”
- Tatiana Petrova, CH
Lunch 12 to 13
POSTER SESSION D,E & F13 to 14
E. Session, Afternoon 13 to 17 “Neurological diseases”
- Donald W. Cleveland, USA “Gene silencing therapy for human neurodegenerative disease”
- Antonio Federico, IT
- Jesus Requena, ES
- Edward Wild, UK
POSTER SESSION D,E & F 17 to 19
Social event: Delegates’ dinner/party
SATURDAY, MARCH 10th
F. Session, 9 to 14, public session “Patients and research” and Rare Disease Day Emilia Romagna
Program updated September 20, 2017
