Conferenza
Rare diseases: Europe's challenges
venerdì 31 ottobre 2014, ore 10:00 - 17:15

Aula
Palazzo dei Gruppi
Camera dei deputati

via di Campo Marzio, 74
00186 Roma

10.00-11.00 Welcome Address
Laura BOLDRINI, President of the Chamber of Deputies
Beatrice LORENZIN, Minister of Health
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 challenges
Paola TESTORI COGGI, Director General of the Directorate-General for Health and Consumers

11.15 - European Reference Networks
Michael 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 treatment
Paul LASKO, Chair of International Rare Diseases Research Consortium

11.45 - EUROPLAN: from the Council Recommendations to National Plans to actions
Domenica TARUSCIO, Director of National Centre for Rare Diseases, Italian National Institute of Health

12.00 - The Italian National Network for Rare Diseases
Maria Elena CONGIU, Ministry of Health

12.15 - Centres of expertise and Regional Networks
Paola FACCHIN, Coordinator of the Interregional Committee on Rare Diseases

12.30 - A community for rare diseases: an experience of participatory quality assessment
Giovanni 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 needs
Participants:
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 medicine
Amalia EGLE GENTILE, National Centre for Rare Diseases, Italian National Institute of Health

15.15 - Towards a culture of data sharing and best practices
Luciano VITTOZZI , National Centre for Rare Diseases, Italian National Institute of Health

15.30 Discussion

16.00 - Towards new treatments: research, development, access and rehabilitation
Luciano VITTOZZI, National Centre for Rare Diseases, Italian National Institute of Health

Research
Giuseppe NOVELLI, Rector of Tor Vergata University, Rome

New frontiers in genetic definition and care of Rare Diseases
Alessandra FERLINI, Director of the Medical Genetics Unit, University of Ferrara

Development of orphan drugs
Massimo SCACCABAROZZI, President of Farminidustria

Treatments and rehabilitation
Eugenio 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





On-line registration: https://www.surveymonkey.com/s/SWVSQVD








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