EUCERD/EMA Workshop: Towards a public-private partnership for ...
EUCERD/EMA Workshop: Towards a public-private partnership for ...
EUCERD/EMA Workshop: Towards a public-private partnership for ...
- TAGS
- partnership
- ifc.cnr.it
Create successful ePaper yourself
Turn your PDF publications into a flip-book with our unique Google optimized e-Paper software.
<strong>EUCERD</strong>/<strong>EMA</strong> <strong>Workshop</strong>: <strong>Towards</strong> a <strong>public</strong>-<strong>private</strong> <strong>partnership</strong> <strong>for</strong> registries<br />
in the field of rare diseases – 4 October 2011<br />
List of participants<br />
<strong>EMA</strong> & COMP<br />
1. Jordi Llinares Garcia <strong>EMA</strong><br />
2. Stella Blackburn <strong>EMA</strong>/ENCEPP<br />
3. Kerstin Westermark COMP<br />
4. Patrick Salmon COMP<br />
5. Birthe Byskov Holm COMP<br />
6. Lesley Green COMP<br />
7. Pauline Evers COMP<br />
8. Richard Vesely <strong>EMA</strong><br />
9. Bruno Sepodes COMP<br />
10. János Borvendég COMP<br />
11. Judit Eggenhofer COMP<br />
12. Maria Mavris COMP<br />
European Commission<br />
13. Antoni Montserrat DG Sanco<br />
14. Jerome Boehm DG Sanco<br />
15. Karl Freese DG Sanco (to be confirmed)<br />
16. Catherine Berens DG Research<br />
17. Georgios Margetidis Executive Agency <strong>for</strong> Health and Consumers<br />
Industry representatives<br />
18. Anne DE BOCK Astra Zeneca<br />
19. Katia FINCK Shire<br />
20. Ruediger GATERMANN CSL Behring Biotherapies <strong>for</strong> Life<br />
21. Wills HUGHES-WILSON Genzyme<br />
22. Samantha PARKER OrphanEurope<br />
23. Geraint THOMAS GSK<br />
24. Barbara VALENTA Baxter<br />
25. Martine ZIMMERMANN Alexion<br />
26. Dominique TERSAGO Ablynx<br />
<strong>EUCERD</strong> Scientific Secretariat & Bureau<br />
27. Ségolène Aymé Orphanet, <strong>EUCERD</strong> Chair<br />
28. Helena Kääriäinen National Institute <strong>for</strong> Health, Finland, <strong>EUCERD</strong> Vice-Chair<br />
29. Kate Bushby Treat-NMD, <strong>EUCERD</strong> Vice-Chair<br />
30. Charlotte Rodwell <strong>EUCERD</strong> Scientific Secretariat
Experts/related project leaders<br />
31. Nils Feltelius MPA : Swedish EU Presidency Project Assessing drug<br />
effectiveness<br />
32. Guiseppe Traversa ENCEPP<br />
33. Domenica Taruscio EPIRARE, Istituto Superiore di Sanita<br />
34. Luciano Vittozzi EPIRARE, Istituto Superiore di Sanita<br />
35. Manuel Posada Spanish Repository, Instituto de Investigación de<br />
Enfermedades Raras<br />
36. Matic Meglic Institute of Public Health, Slovenia, PARENT JA on Patient<br />
Registries<br />
37. Fabrizio Bianchi Istituto di Fisiologia Clinica, Consiglio Nazionale delle Ricerche<br />
38. Sabina Gainotti Istituto Superiore di Sanita<br />
Experts/academic registry leaders<br />
39. Carla Hollak Gaucher/Fabry registry<br />
40. Stuart Tanner Eurowilson Registry<br />
41. Susan Webb ERCUYSN Registry<br />
42. Jean Donadieu EHN EuroHistioNet Registry<br />
43. Marco Gattorno INFEVERS & EUROFEVER Registry<br />
44. Christine Lavery English MPS Registry<br />
45. Anil Metha ECFS Registry<br />
46. Guilliaume Jondeau Marfan Cohort<br />
47. Tsveta Schyns ENRAH Registry<br />
48. Hanns Lochmuller Treat-NMD Registry<br />
49. Corneila Zeidler European severe chronic neutropenia registry<br />
Patient representatives<br />
50. Christel Nourissier EURORDIS<br />
51. Bianca Pizzera EURORDIS<br />
52. Ulrike Pypops EURORDIS<br />
53. Fabrizia Bignami EURORDIS EPIRARE<br />
54. Monica Ensini EURORDIS EPIRARE<br />
55. Andreas Reimann ACHSE<br />
56. Jeremy Manuel European Gaucher Association<br />
Other experts:<br />
57. Magnus Stenbeck Karolinska Institute, Swedish Research Council<br />
58. Alric Reuther Institute <strong>for</strong> Health Care, Germany<br />
59. Nancy Dreyer OUTCOME Chief of Scientific Affairs & Sr. Vice President
Change language