| MONDAY
26 OCTOBER |
| 13.00 |
Registration opens |
|
|
| OPENING |
| 14.30 |
10 years of Partnering
for rare disease therapy development
Alastair Kent, Chair EPPOSI United Kingdom
HI&RH Princess Astrid of Belgium
Laurette Onkelinx, Minister for Social Affairs and Public Health
Belgium |
| 15.30 |
Break |
| |
|
SESSION 1
IMPACT OF THE ECONOMIC CRISIS ON THE FIELD OF RARE DISEASES:
WHAT IS THE IMPACT ON R&D, DIAGNOSIS AND ACCESS? |
| Sessions Moderators: |
Alastair Kent, Chair EPPOSI,
United Kingdom
Erik Tambuyzer, Vice Chair EPPOSI, Belgium |
| 16.00 |
Panel Discussion
Terkel Andersen, EURORDIS Denmark
Sιgolθne Aymι, Chair of the Rare Diseases Task Force, DG SANCO France
Jo De Cock, INAMI Belgium
Willem van Weperen, to-BBB The Netherlands
Timothy M. Cox, University of Cambridge United Kingdom
Heinrich Schulte, Hamburg Germany |
| 17.00 |
Discussion with the
audience |
| 18.00 |
End of Day 1 |
| 19.30 |
Reception and Dinner |
|
|
|
|
|
TUESDAY 27 OCTOBER |
| 8.00 |
Doors Open |
|
|
SESSION 2
BUILDING ON THE POLICY BASE OF THE LAST 10 YEARS TO ADVANCE POLICY IN
THE
NEXT 5 YEARS |
| Sessions Moderators: |
Yann Le Cam, EURORDIS
France
Giulia Del Brenna, European Commission Belgium |
| 8.30 |
Introduction/Overview
Yann Le Cam, EURORDIS France |
| 8.50 |
How to increase
the number of Rare disease therapies under Research & Development
to cover unmet medical needs?
Kerstin Westermark, EMEA Sweden
Sιgolθne Aymι, Orphanet France
Panel:
Manuel Hallen, European Commission, DG Research Belgium
Pauline Evers, Nederlandse Federatie van Kankerpatientenorganisaties (NFK)
The Netherlands
Discussion with the audience |
| 10.00 |
Break |
| 10.30 |
How to improve
the success rate of OD Development between Orphan Drug
Designation (ODD) and Marketing Authorisation?
Katerina Kubackova, University Hospital of Motol Czech Republic
Jordi Llinares, EMEA United Kingdom
Panel:
Kathy Needleman, Director of Orphan Products Grants Program, Office
of Orphan Products Development Food and Drug Administration USA
Marie-Christine Fortun, Orphan-Europe France
Discussion with the audience |
| 11.40 |
How to provide
sustainable access to OMP at national level?
Wills Hughes-Wilson, Genzyme Belgium
Andrea Rappagliosi, GlaxoSmithKline Switzerland
Panel:
Mattias Neyt, KCE Belgium
Larry Warren, ALFA Europe Ireland
Discussion with the audience |
| 12.50 |
Lunch |
|
|
| SESSION 3
RARE CANCERS |
| Session Moderators: |
Paolo Casali, ESMO Italy
Jean-Jacques Cassiman, ESHG Belgium |
| 14.00 |
Introduction
Jeanne-Marie Brιchot, Institut National du Cancer France
Jean-Jacques Cassiman ESHG |
| 14.10 |
How to address
the needs of Patients with rare cancers? Commonalities
and differences with rare diseases.
Paolo Casali, European Society for Medical Oncology Italy
Kerstin Westermark, EMEA/COMP Sweden
Sandy Craine, CML Advocates Network United Kingdom
Markus Wartenberg, Das Lebenshaus Germany
Industry representative (TBI) |
| 14.35 |
Questions and Answers |
| 14.45 |
Clinical research,
therapy development and regulatory considerations
Jean-Yves Blay, Conticanet, Belgium
Jan Lilliemark, Swedish Medicines Agency (TBC)
Jan Geissler, ECPC Germany
Katrin Rupalla, Celgene Switzerland |
| 15.10 |
Questions and Answers |
| 15.20 |
Break |
| 15.50 |
Access (to information,
timely and correct diagnosis, therapies including centres of
excellence/HTA/reimbursement/multidisciplinary teams, patient mobility,
etc)
Garth Cruickshank, Queen Elizabeth Hospital United Kingdom
Alberto Costa, European School of Oncology Italy
Kathy Oliver, International Brain Tumour Alliance United Kingdom
Robert Metz, IDM Pharma USA (TBC)
Karl Freeze, European Commission Belgium |
| 16.15 |
Questions and Answers |
| 16.25 |
Discussion with the audience
Where are we? What have we achieved on the RT conference
recommendations? What
should we jointly do as next actions? |
| Chairs: |
Paolo Casali, European
Society for Medical Oncology (ESMO) Italy
Jean-Jacques Cassiman, ESHG Belgium |
|
|
| CLOSING
SESSION |
| 17.00 |
Conclusions and
Next Steps
Alastair Kent, Chair EPPOSI United Kingdom
Erik Tambuyzer, Vice Chair EPPOSI Belgium |
| 17.20 |
End of the Workshop |
