MPNE 2016 program

Melanoma Patient Network Europe 17th- 20th March 2016 Leuven, Belgium

Power to the Patient!

With great power comes great responsibility.

“The future is not shaped by people who don’t really believe in the future. It is created by highly motivated people, by enthusiasts, by men and women who want something very much or believe very much.” John Gardner

MPNE annual conference for European Melanoma Advocates

www.melanomapatientnetworkEU.org MPNE 2016- 17th- 20th March 2016- Leuven

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MPNE 2016 Location Martin’s Klooster Hotel Onze-Lieve-vrouw-straat 18 3000 Leuven Belgium klooster@martinshotels.com phone +32 16 21 31 41

Organizer MPNEsupport Fjällbo Selknä 152 75597 Uppsala Sweden

Responsible Bettina Ryll Gilliosa Spurrier Violeta Astratinei Iain Galloway

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Dear MPNE2016 participant, a very warm welcome to the annual conference of our Melanoma Patient Network Europe in Leuven!

Patient Empowerment has become a major topic, turning patients from mere objects of healthcare to active participants shaping not only their own care but also increasingly the healthcare system as such. We felt it was therefore time to dedicate an entire conference to the topic- a conference by us about us!

Many of you contributed on scrumblr what an empowered Melanoma patient looks like for our network and knowledge turned out to be the underlying theme.

MPNE2016 first topic is therefore knowledge that useful for Melanoma patients and advocates: knowledge itself, how to obtain it but also how to share it for an ever-increasing number of empowered Melanoma patients.

The second topic will be Melanoma advocacy in Europe.

Language and cultural differences are both challenge and asset for our network- so please make full use of this weekend to meet your European colleagues, exchange ideas and be inspired!

We are also very happy to announce MPNE ocular, the MPNE sister network for patients with ocular Melanoma that will allow us to better help network members with this rare Melanoma type.

As Melanoma patients in Eastern Europe struggle with a particular set of problems, especially with regards to access to medicines, we also form a working group, MPNEE- Melanoma Patient Network Eastern Europe, that will meet for the first time in Leuven.

Bettina, Gilly, Violeta and Iain

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MPNEhubs pre-conference by invitation only

Thursday, 17th March Dinner in Leuven for MPNEhub advocates Friday 18th March MPNEhub meeting- agenda coming separately

Program MPNE2016 version 9th March

Friday, 18th March 12.00 Buffet Lunch Meet your online Melanoma colleagues in real life for lunch!

14.00- 14.45 Opening Session Welcome and Introduction to MPNE and this conference Bettina Ryll, MPNE, Sweden E5- EPF’s Patient Empowerment Campaign Anders Olauson, EPF president, Sweden 14.45- 15.30 - ADVOCACY Session 1- MPNE workshop introductions 1.1 The need for early detection in Melanoma 15’ Ana-Maria Forsea, MPNE 1.2 Who owns my DATA? 15’ Scott Wagers, eTRIKS, Belgium 1.3. Psychosocial Support in Melanoma 15’ Anne Rogiers, CHU-Brugmann, Belgium

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15.30- 16.00 Coffee 16.00- 17.30 Workshops 1.1 Early Detection* 1.2 Data* 1.3 Living and coping with Melanoma* Lists of your workshop group will be available at the conference.

17.45 – 18.45* MPNE ocular meeting Iain Galloway, MPNE ocular 18.00- 19.00* Advocacy Speed- Dating with Tom & Koen Tom van der Velde, Melanoompunt.be, BE, and Koen van Elst, Stichting Melanoom, NL. 19.00- 20.00 World Cafe Reception Join us for networking and brain-storming about the topic patient empowerment!

Anne Wispler, Hans Boetl and Martina Kiehl, Hautkrebs Netzwerk, D. 20.00 Dinner at Martin’s Klooster

*parallel sessions

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SATURDAY- 19TH MARCH KNOWLEDGE IS POWER.

9.00- 10.30 Session 1- Melanoma I 1.1 Knowledge is power.

Lucy Davis, Melanoma Stage 4, UK 1.2 Melanoma is not 'just' skin cancer.

Know your disease- an introduction to Melanoma.

Alexander Rösch, University Hospital Essen, Germany 1.3 How to treat Melanoma in 2016 Pascal Wolter, CHR Verviers, Belgium 10.30- 11.00 Coffee 11.00- 12.30 Session 2- Melanoma II 2.1 Living with a rare Melanoma.

Iain Galloway, MPNE Ocular, Stage IV Ocular Melanoma patient, UK 2.2 Immune therapies and latest therapies in skin and ocular Melanoma Christian Ottensmeier, University of Southampton, UK 12.30- 14.00 Lunch do not forget to hand in your Grand Challenge Results!

14.00- 15.30 Session 3- Knowledge is power 3.1 Introduction Gilliosa Spurrier, MPNE and Mélanome France, France 3.2 The art of teaching- Instructional design Karel Verkoelen, Sanofi, France 3.3 Reading Scientific Papers 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

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16.00- 18.00 Session 4- Meet your European Advocacy Colleagues 4.1 Astrid Nollen-De Heer, Stichting Melanoom, NL 4.2 Andrew Evans, A Cure in sight, US and NL 4.3 Eline Bunnik, Department of Medical Ethics of Erasmus, Rotterdam, NL (Well, some of) the networks your colleagues are building: 4.4 Anne Wispler/ Hans- Walther Boetel- a German Melanoma network, Hautkrebs Netzwerk.

4.5 Rune Holst Johansen- Netværk Modermærkekræft, the Danish Melanoma organisation 4.6 Luc Vautmans- Melanoompunt.be- a new Belgian Melanoma network 4.7 Savo Pilipovic- the Serbian Melanoma patient association 4.8 Imogen Cheese- the UK Melanoma patient conference Panel discussion moderated by Gilly and Violeta 'How to start a national patient network'- everyone's expertise and questions welcome!

18.30 Reception 19.30 Dinner at Martin’s Klooster Dinner speech and prize for the MPNE2016 Grand Challenge Roald Nystad, FØFLEKKREFTFORENINGEN, Norway The MPNE2016 Grand Challenge Test your advocacy skills in collaboration, research and smart thinking and compete for a prize!

In collaboration with the Anticancer Fund Belgium

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SUNDAY- 20TH MARCH ADVOCACY DAY- POWER AND RESPONSIBILITY please check-out after breakfast 9.00- 10.30 Session 5- Focus on Advocacy 5.1 MPNE driving research- lessons learned in 2015.

Bettina Ryll, 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 European Melanoma Advocacy?

10.30- 11.00 Coffee 11.00- 12.30 Closing Session • •

Workshop reports: 3x 10’ Conference Summary and Conclusion

12.45 Lunch and departure

And before you leaveYour feed-back is valuable- it helps us organise events that bring European Melanoma advocacy forward. You will receive a link to an online survey- an MPNEmonkey- and we appreciate your timely answer.

Reimbursement of travel expenses for economy/ second class travel up to a maximum of 350 Euro after the event against travel receipts and a completed reimbursement form.

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Up-coming events (selection) MPNE QuickStart workshop 10th- 12th June, Pisa ESMO 2016 7th- 10th October, Copenhagen Information about travel fellowships will be shared in time via the usual channels!

MPNE autumn workshop 2016 HTA and health economics, co-organised with Panos Kanavos, London School of Economics 24th- 27th November 2016, Krusenberg Herrgård, Sweden

Safe travel and looking forward to seeing you again soon!

MPNE our vision No more Melanoma deaths in Europe.

Access to effective prevention, early detection and treatment for everyone. our principles 1. Patients first.

2. Solutions, not problems.

3. Data, not opinions. our approach- Lean advocacy.

Our approach to advocacy is pragmatic- we test, we learn, we improve. As fast as possible as Melanoma does not wait.

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Faculty MPNE2016 Bettina Ryll, MPNE, Sweden Anders Olauson, European Patient Forum, Sweden Ana-Maria Forsea, Romanian Skin Cancer Foundation, MPNE, Romania Scott Wagers, eTRIKS, Belgium Anne Rogiers, CHU-Brugmann, Belgium Iain Galloway, MPNE ocular, United Kingdom Tom van der Velde, Melanoompunt.be, Belgium Koen van Elst, Stichting Melanoom, Netherlands Anne Wispler, Hautkrebs Netzwerk, Germany Hans Boetl, Hautkrebs Netzwerk, Germany Martina Kiehl, Hautkrebs Netzwerk, Germany Lucy Davis, UK Alexander Rösch, University Hospital Essen, Germany Pascal Wolter, CHR Verviers, Belgium Iain Galloway, MPNE Ocular, UK Christian Ottensmeier, University of Southampton, UK Gilliosa Spurrier, MPNE and Mélanome France, France Karel Verkoelen, Sanofi, France Rianne Cuijpers, Netherlands Astrid Nollen-De Heer, Stichting Melanoom, Netherlands Eline Bunnik, Department of Medical Ethics of Erasmus MC, University Medical Centre Rotterdam, Netherlands Andrew Evans, A Cure in Sight, Netherlands Rune Holst Johansen, Netværk Modermærkekræft, Denmark Luc Vautmans, Melanoompunt.be, Belgium Save Pilipovic, Melanoma patient association, Serbia Imogen Cheese, The UK Melanoma Patient Conference, United Kingdom Svilen Konov, HIV activist, United Kingdom Roald Nystad, FØFLEKKREFTFORENINGEN and MPNE, Norway Violeta Astratinei, Stichting Melanoom, Melanom Romania and MPNE, Netherlands Thank you to •

All the speakers and volunteers without whom this event would have been impossible.

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Alexandra Sorgenicht and her team for their dedication to capture our concerns on film.

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Robin Jaubin from Martin’s Klooster for his enormous support in the preparation for this event.

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Good to know Currency in Belgium EURO Cash machines can be found in the arrival area at the airport.

Dresscode Business casual Weather an umbrella might be a good idea Closest Airport Brussels International Airport Zaventem Martin’s Klooster Martin’s Klooster hotel Onze-Lieve-vrouw-straat 18 3000 Leuven Belgium klooster@martinshotels.com +32 16 21 31 41

Transfers You are responsible for organizing your own transfer. Queues for taxis at Zaventem airport tend to be long and traffic in Brussels horrific. We therefore recommend to take the direct train to Leuven. The train station is located in the airport, when you come out of the arrival gate across to the right, take the lift or the escalator down to the bottom level. Train tickets can be purchased at the ticket vending machines, all international cards accepted, or at the ticket counter.

From Leuven station, you can either walk (about 1.5 km) or take a taxi to the Hotel.

The entire trip will take you about 40min.

Incidentals The conference budget covers workshop participation, accommodation and meals; please note that you will be responsible for all other extra costs.

Contact during the conference Bettina Ryll +46-722297272 Gilliosa Spurrier +33-676318349 Violeta Astratinei +31-646699527 Iain Galloway +44-7931790201

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We thank for their support

program version 9th March 2016

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