PATIENT DAY AGENDA

(subject to changes) 

Morning

8:15

Registration - Welcoming Coffee

8:15 - 8:45

8:45

"Together we are stronger"

8:45 - 9:00

by Sylvie LE MOAL (President of the Association Française des Malades Atteints de Porphyries) et Rocco FALCHETTO (President of the Swiss Society for Porphyria)

Conference Room

9:00

World Tour: Introducing each Patient Group

9:00 - 10:15

Speaker to be confirmed

Conference Room

10:15

From the test tube to the population: the evaluation and supervision of drugs

10:15 - 10:45

by Pr. Antoine PARIENTE, Pharmacology professor (CHU Bordeaux)

Conference Room

10:45

News from Clinuvel, Alnylam and Orphan

10:45 - 11:30

Dr Vincenzo GIORDANO, MD

International Medical Advisor – ORPHAN EUROPE – RECORDATI GROUP

 

Dr Emilie RODENBURGER

Director – Clinical Affairs – CLINUVEL

 

Dr Amy SIMON

Senior Director – Clinical research – ALNYLAM

 

Conference Room

11:30

How academic research interact with patients'care

11:30 - 12:15

by Pr. Hervé PUY

Centre Français des Porphyries, INSERM U1149, Biochimie et Biologie Moléculaire
Chef du Pôle Biologie – PUI, Hôpitaux Universitaires Paris Nord Val de Seine
UFR Médecine Université Paris Diderot, Conseil National de Biologie Médicale

Conference Room

12:15

Lunch Break

12:15 - 13:30

Afternoon

13:30

Psychological assistance :The feeling of guilt

13:30 - 14:00

by Françoise HOUDAYER, clinician psychologist, Clinical Genetics department (CHU of Lyon)

Conference Room

14:00

Q&A session on EPP

14:00 - 15:30

Round Table with Pr. Laurent GOUYA, Pr. Janneke LANGENDONK and Pr. Elisabeth MINDER

Conference Room

14:00

Q&A session on Acute Hepatic Porphyrias

14:00 - 15:30

Round Table with Pr. Robert DESNICK, Pr. Mike BADMINTON, Pr. Karl ANDERSON, Pr. Eliane SARDH, Pr. Mark Sonderup and Dr. Neila TALBI.

Gabriel 1

14:00

Q&A session on Cutaneous Porphyrias

14:00 - 15:30

Round Table with Pr. Alain TAIEB, Pr. George ELDER and Pr. Hubert de VERNEUIL.

Gabriel 2

16:00

Farewell Coffee

16:00 -

18:00

Come together Party

18:00 - 20:00

Mercure Bordeaux Cité Mondiale

18 Parvis des Chartrons

33 080 Bordeaux