venerdì 31 ottobre 2014, ore 10:00 - 17:15
10.00-11.00
Welcome AddressLaura BOLDRINI, President of the Chamber of Deputies
Beatrice LORENZIN, Minister of Health
Gualtiero Walter RICCIARDI, Commissioner of the Italian National Institute of Health
Luca PANI, General Director of the Italian Medicines Agency
Zygmunt ZIMOWSKI, President of the Pontifical Council for Health Pastoral Care
Session 1
Chairs
Paola BINETTI, Member of the Italian Chamber of Deputies
Bruno DALLAPICCOLA, Scientific Director of “Bambino Gesù Hospital”
11.00 -
Rare Diseases: Europe's challengesPaola TESTORI COGGI, Director General of the Directorate-General for Health and Consumers
11.15 -
European Reference NetworksMichael HUEBEL, Head of Unit, Health Programme and Diseases, DG SANCO, European Commission
11.30 -
Global initiatives to foster research in rare diseases: from prevention to treatmentPaul LASKO, Chair of International Rare Diseases Research Consortium
11.45 -
EUROPLAN: from the Council Recommendations to National Plans to actionsDomenica TARUSCIO, Director of National Centre for Rare Diseases, Italian National Institute of Health
12.00 -
The Italian National Network for Rare DiseasesMaria Elena CONGIU, Ministry of Health
12.15 -
Centres of expertise and Regional NetworksPaola FACCHIN, Coordinator of the Interregional Committee on Rare Diseases
12.30 -
A community for rare diseases: an experience of participatory quality assessmentGiovanni CARACCI, Micaela CERILLI, AGENAS
12.45-13.15 Discussion
13.15-14.15 Break
Session 2
Chairs
Anna Mirella TARANTO, Head of Press Office, Italian National Institute of Health
Domenica TARUSCIO, Director of National Centre for Rare Diseases, Italian National Institute of Health
14.15 -
Patients and families: unmet needsParticipants:
Renza BARBON GALLUPPI, President of UNIAMO FIMR Onlus
Yann LE CAM, Chief Executive Officer, EURORDIS
Andrea MANTO, Director of the Centre for Health Pastoral Care
15.00 -
Rare patients, frequent stories: narrative and evidence based medicineAmalia Egle GENTILE, National Centre for Rare Diseases, Italian National Institute of Health
15.15 -
Towards a culture of data sharing and best practicesLuciano VITTOZZI , National Centre for Rare Diseases, Italian National Institute of Health
15.30 Discussion
16.00 -
Towards new treatments: research, development, access and rehabilitationLuciano VITTOZZI, National Centre for Rare Diseases, Italian National Institute of Health
ResearchGiuseppe NOVELLI, Rector of Tor Vergata University, Rome
New frontiers in genetic definition and care of Rare DiseasesAlessandra FERLINI, Director of the Medical Genetics Unit, University of Ferrara
Development of orphan drugsMassimo SCACCABAROZZI, President of Farminidustria
Treatments and rehabilitationEugenio Maria MERCURI, Director of Dept. of Paediatric Neurology, Catholic University, Rome
16.45 General discussion
17.15 Conclusions
Organized by The National Centre for Rare Diseases, Italian National Institute of Health (ISS), Interparliamentary Group on Rare Diseases
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