Final Agenda and Invited Speakers for Sunday September 13th, 2015: Patients Day
We have managed to attract many prestigious speakers, involved in the latest research on acute and cutaneous porphyrias, and we hope more specialists will accept our invitation and take the opportunity to discuss with us, during and after the official program has come to a close.
Thanks a lot to our speakers and of course all other active researchers for their time and hard work they put into this great endeavour!
08:30 - 08:40
Welcome from the organizing committee
08:40 - 08:45
International Porphyria Patient Study
Suzanne White, CAN
08:45 - 08:55
Welcome address by the chairman of the conference
Priv.-Doz. Dr. med. Jorge Frank, GER
08:55 - 09:45
Introduction of various patient organisations
Session 1: Cutaneous Porphyrias
09:45 - 10:45
Introduction to cutaneous porphyrias
Dr. Janneke Langendonk, NL
10:45 - 11:00
Coffee Break
11:00 - 12:00
Market Authorisation of Scenesse
Prof. Elisabeth Minder, CH
12:00 - 12:15
Patient view
Irene Lam, NL (Singer)
12:15 - 13:30
Lunch
Dining Hall, ground floor
13:30 - 14:30
Prospects for a splice modulating therapy for EPP
Prof. Daniel Schümperli, CH
Session 2: Acute Porphyrias
14:30 - 15:30
Introduction to the acute porphyrias
Prof. Christer Andersson, SWE
15:30 - 16:30
Acute Porphyrias – Current and emerging therapies
Prof. Robert Desnick, USA
16:30 - 16:40
Coffee Break
16:40 - 16:55
Patient view
Desiree Lyon, USA (President of the American Porphyria Foundation)
16:55 - 18:00
Closing of the Patient Day and informal exchange between patients & experts
