MPNEsupport Org 802492-1069, Sweden

Melanoma Patient Network Europe

Program 

MPNE WORKSHOP KRUSENBERG 22nd- 24th November 

Last update 22nd November 2019 BR

Effective 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

14.30- 15.30 Coffee

15.30- 16.30

Elevator introductions and introduction to the weekend: Effective Advocacy
Bettina Ryll, MPNE

16.30- 17.30 Melanoma Histopathology and Molecular Pathology
An introduction to Melanoma histopathology, Molecular Pathology as well as ongoing efforts in the European Pathology community of relevance to patient advocates
Daniela Massi,Careggi University Hospital Florence, Italy, confirmed

17.30- 18.00 Update: Early Melanoma- predicting progression
Arjan van Manen and Dennie Tempel, SkylineDx

18.00- 19.15 The Melanoma research we need

Mapping research needs in Melanoma

Bettina Ryll

19.15- 19.30 WECAN

Gilly Spurrier

20:00 Dinner

Saturday, 24th November

from 8.00 Breakfast 

9.00- 10.00 FAIR data
Nigel Hughes, European Health Data and Evidence Network  

​10.00- 10.30 Coffee

10.30- 11.45 Advocacy at regulatory level
End points that matter to patients
Jorge Camerero, AEMPS, Spanish Medicines Agency, and CHMP alternate at EMA
The European Medicines Agency from a patient advocate’s experience
David Haerry, Patvocates

preparation

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

12.00- 13.00 Lunch

13.30- 15.00 Value Assessment Frameworks and Patient Preferences

Axel Mühlbacher, Hochschule Neubrandenburg, Germany, confirmed

15.00- 15.30 Coffee
​

15.30- 17.30 Session- Ethical considerations in Early Access Programs
Jan Liliemark, SBU, Swedish Council for Health Technology Assessment, Sweden, Mark Sheehan, The Ethox Centre, University of Oxford, confirmed

17.30- 18.30 Effective communication in advocacy: Tips and Tricks 
Petra Naster, Vital Transformation, confirmed
​
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

Effective Advocacy

30' Learning from the Red Cross Disaster Response

Andrew Evans, MPNE

Updates
15’Cross-border Access to clinical trials
Erik Näsman
15’ FAIR patient data
Rob White

10.00- 10.30 Coffee

10.30- 12.30 MPNE in 2020 

10.30- 11.30 The Melanoma project 

Otso Valta

• 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

12.30- 12.45

Workshop Summary and Closure
Bettina Ryll, MPNE

13.00- 14.00

Lunch and Departure