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 et Rocco FALCHETTO

Conference Room

9:00

World Tour: Introducing each Patient Group

9:00 - 10:00

Speaker to be confirmed

Conference Room

10:00

Orphan Drugs: From Test Tube to the Chemist Shelf

10:00 - 10:30

by Pr. Antoine PARIENTE (CHU Bordeaux)

Conference Room

10:30

News from Clinuvel, Alnylam and Orphan

10:30 - 11:15

Speaker to be confirmed

Conference Room

11:15

News from ongoing resarch In Porphyria Hospitals

11:15 - 12:00

by Pr. Hervé PUY

Conference Room

12:00

Lunch Break

12:00 - 13:15

Afternoon

13:15

Getting help from Psychologists, why is it so important ?

13:15 - 14:00

by Françoise HOUDAYER, clinician psychologist at the 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

Room 1

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 and Dr. Neila TALBI.

Room 2

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.

Room 3

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