important  

Workshop participation, travel

and full-board accommodation 

will be free for participants.

Participation is upon application only.

Last update 7th July 2019 BR

Program 

MPNE WORKSHOP KRUSENBERG 22nd- 24th November 


Melanoma Patient Network Europe


Surviving Melanoma in Europe.  

Access to prevention, early detection and effective treatment for all.

ADvocacy-

Evidence, Strategy, impact.

Annual MPNE workshop for European Melanoma advocates

'WITHOUT DATA YOU ARE JUST ANOTHER PERSON WITH AN OPINION'. 
W. EDWARDS DEMING.


​22nd- 24th November 2019

arrival 22nd mid-day


Location 

Krusenberg Herrgård, Uppsala, Sweden 



Please bring your laptops or tablets for the group work 


Friday, 22nd November
Day 1


Arrival and registration- please check sub-group meeting agenda before main workshop starts



15.00- 15.30 Coffee


15.30- 16.30

Welcome to the workshop
Elevator introductions with a twist

16.30- 17.30
Scientific Strategy for advocates. A primer.
‘reading scientific literature’ the next step up- how to draft a scientific argument to support your advocacy efforts
Bettina Ryll, MPNE


17.30- 18.30

Statistics- Subgroup analyses versus risk stratification
Darren Dahly, UCC, Cork, Ireland


18.30- 19.30
Advocacy Session Fair contracts with industry
Jan Geissler, WECAN

20:00 Dinner



Saturday, 24th November

from 8.00 Breakfast 


8.30- 10.00 Advocacy at regulatory level
45’ End points that matter to patients
Jorge Camerero, AEMPS, Spanish Medicines Agency, and CHMP alternate at EMA
45’ The European Medicines Agency from a patient advocate’s experience
David Haerry, 


preparation

please review the role and the work of the European Medicines Agency, e.g. here

10.00- 10.30 Coffee


10.30- 11.45
Advocacy Session: Effective communication: Tips and Tricks 
Petra Naster, Vital Transformation

12.00- 13.00 Lunch

13.30- 15.00 Session- Real World Evidence in decision-making
What is Real World Evidence and why does it matter?
Speaker tbc
A study into the real world use of CART cells
Amr Madady, ZIN, Netherlands, invited

15.00- 15.30 Coffee

15.30- 17.00 Session- Ethical considerations in Early Access Programs
Jan Liliemark, SBU, Swedish Council for Health Technology Assessment, Sweden, invited

17.00- 18.00 What do YOU want? And what do WE want? Patient involvement in decision-making


19.00- 19.30 Glögg och Pepparkakor

Join us for a very Swedish tradition


19.30 Julbord Dinner 


Sunday, 25th November

Advocacy Day MPNE members only


8.00- 9.00

Breakfast

please make sure you check out


9.00- 10.00

MPNE advocacy: working effectively

Learning from the Red Cross Disaster Response

Andrew Evans, MPNE


10.00- 10.30 Coffee


10.30- 12.30

MPNE in action 


  • Update about recent developments within MPNE- Horizon2020 projects in rare Melanomas, new meetings, growing network
  • Annual session: unmet need in the network
  • MPNE in 2020- annual conference, meetings, other opportunities
  • Ask your colleagues: topics you want to discuss with other MPNEhubs


12.30- 12.45

Workshop Summary and Closure
Bettina Ryll, MPNE

13.00- 14.00

Lunch and Departure