arrival MPNE hub advocates
MPNE hub meeting- for advocates involved in MPNE projects
arrival of conference participants
Start the conference with meeting your online advocate colleagues in real life over lunch!
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
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
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.
MPNE ocular meeting
Iain Galloway, MPNE ocular
Tom van der Velde, Melanoompunt, BE and Koen van Elst, Stichting Melanoom, NL
World Cafe reception
Anne Wispler and Hans Boetl, Selbsthilfe Gruppe Berlin, D and Martina Kiehl, Selbsthilfe Buxtehude, D
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
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
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
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!
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?
Conference Summary and Conclusion
Lunch and departure
We are looking forward to meeting you in Leuven!
In 2015, EPF, the European Patient Forum, launched a 1-year campaign onPATIENT EMPOWERMENT.
Find out morehere
Read the conference report
No more Melanoma deaths in Europe. Access to prevention, early detection and effective treatment for everyone.
Melanoma Patient Network Europe
Ideas worth sharing
Share your Melanoma Advocacy work to inspire others- the faster we learn from each other, the better our chances to make a real difference for Melanoma patients in Europe.
18th- 20th March 2016