MPNEhubs 2016- by invitation only

Thursday- 17th

afternoon
arrival MPNE hub advocates

19.00

Dinner

Friday- 18th 

8.30- 12.30
MPNE hub meeting- for advocates involved in MPNE projects

Main conference

program version 15th march

parallel sessions marked in blue

​Friday- 18th March

morning- mid-day
arrival of conference participants

12.00- 14.00

LUNCH 

Start the conference with meeting your online advocate colleagues in real life over lunch!

POWER TO THE PATIENT

14.00 - 14.45

opening sessiON

F.1 Welcome and introduction to the conference

Bettina Ryll, MPNE founder

F.2 Patient Empowerment

Camille for Anders Olauson, European Patient Forum, president, Belgium

Power to the patient workshops

14.45- 15.30

Introduction to the workshops

F.3 W1 Early detection

F.4 W2Data Scott Wagers, eTRIKS.

F.5 W3 Psychosocial support 

​Anne Rogiers, University Hospitals Brugmann and Brussels, Belgium.

F.6 The MPNE challenge

Ann-Christine Moenaert, Anticancerfund, Belgium

15.40- 16.00

Coffee

16.00- 17.30

Workshops

W1  Early detection

      What should it look like and how to we reach more people?

W2 MY data- a play/ decide discussion on data

      Who should own my data? With whom should I share my data? Join a new        discussion game to form your opinion. Scott Wagers, eTRIKS.

​W3 Living and coping with Melanoma

       Psychosocial support- what it is, how to get it and what we as network can do. Anne Rogiers, University Hospitals Brugmann and Brussels, Belgium.

17.45- 18.45 

MPNE ocular meeting

Iain Galloway, MPNE ocular

18.00- 18.45

Advocacy speed dating by Tom & Koen

Tom van der Velde, Melanoompunt, BE and Koen van Elst, Stichting Melanoom, NL

19.00

World Cafe reception

Anne Wispler and Hans Boetl, Selbsthilfe Gruppe Berlin, D and Martina Kiehl, Selbsthilfe Buxtehude, D

20.00

Welcome Dinner

Saturday- 19TH MARCH

Knowledge is Power.

9.00- 10.30 

Session 1- Melanoma

​1.1 Knowledge is power. 15'

Lucy Davis, Melanoma Stage 4, UK

1.2 Melanoma is not 'just' skin cancer. 30'

Know your disease- an introduction to Melanoma.

​Alexander Rösch, University Hospital Essen, Germany

1.3 How to treat Melanoma in 2016. 30'

Pascal Wolter, CHR Verviers, Belgium

10.30- 11.00

Coffee 

11.00- 12.30 

Session 2- Focus on

2.1 Living with a rare Melanoma. 15'

Iain Galloway, MPNE Ocular, Stage IV Ocular Melanoma patient, UK

2.2 Latest immune therapies in skin and ocular Melanoma 45' 

Christian Ottensmeier, University of Southampton, UK

12.30- 14.00 

Lunch

14.00- 15.30

Session 3- So much to learn! How to educate yourself in Melanoma

3.1 Where to find education about Melanoma and Advocacy

Gilliosa Spurrier, MPNE and Mélanome France, France

3.2 The art to teach- Instructional design

Karel Verkoelen, Sanofi, France

3.3 Reading Scientific Papers- update from the November 2015 workshop

Bettina Ryll, MPNE​

3.4 Understanding early access schemes: compassionate usage, early access and named patient programs. ​

Rianne Cuijpers, Netherlands

​15.30- 16.00

Coffee

​16.00- 18.00
Session 4- Meet your European Advocacy Colleagues

chairs Gilly Spurrier and Violeta Astratinei

4.1 Astrid Nollen-De Heer 15'

4.2 Online Ocular Melanoma Patient Community Survey Results 2016 Andrew Evans 15'

4.3 Ethical issues in efforts to expand access to investigational drugs

Eline Bunnik and Nikki Aarts 15'

(Well, some of) the networks your colleagues are building:

4.4 Anne Wispler/ Hans- Walther Boetel- a German Melanoma network 10'

4.5 Rune Holst Johansen- the Danish Melanoma organisation 10'

4.6 Luc Vautmans- Melanoompunt.be- a new Belgian Melanoma network 10'

4.7 Savo Pilipovic-There is no drugs for melanoma patients in Serbia. 10'

4.8 Imogen Cheese- the UK Melanoma conference 10'

Panel discussion moderated by Gilly and Violeta

'How to start a national patient network'- everyone's expertise and questions welcome!

18.30 Reception and Prize

The MPNE2016 Grand Challenge 
Test your advocacy skills in collaboration, research and smart thinking and compete for a prize!

19.30

Dinner

​

Sunday- 20th MARCH

Advocacy Day- power and responsibility

9.00- 10.30

Session 5- Focus on Advocacy

5.1 Melanoma QoL 100- update from our Melanoma Quality of Life study.
Bettina Ryll, MPNE

5.2 MPNEE- the Melanoma Patient Network Eastern Europe

Violeta Astratinei, MPNE

5.2 The European Community Advisory Boards from the HIV/ AIDS community. Svilen Konov, HIV activist, UK

5.3 Panel discussion: where are we going next in Melanoma Advocacy in Europe?

10.30- 11.00

Coffee

11.00- 12.30

Closing Session

Workshop reports

Conference Summary and Conclusion

12.45

Lunch and departure

​

​

​We are looking forward to meeting you in Leuven!

Read the conference report

the program

MPNE 2016

Annual conference

18th- 20th March 2016

Leuven​​

MPNEsupport Org 802492-1069, Sweden

Melanoma Patient Network Europe