Krusenberg 2019 program

Melanoma Patient Network Europe Krusenberg 2019 Effective Advocacy

hubs

22nd - 24th November 2019 Uppsala, Sweden

MPNE Krusenberg2019 annual workshop for MPNEhubs Location Krusenberg Herrgård Krusenberg 436 755 98 Uppsala Sweden Tel 0046-18 18 03 00 Coordinates GPS-koordinater Latitud: N 59° 44′ 8″ Longitud: E 17° 38′ 58″ Latitud: 59.73558245943259 Longitud: 17.649586782639698 X: 6625424 Y: 1603732

Organizer MPNEsupport Fjällbo Selknä 152 75597 Uppsala Sweden Organising team Bettina Ryll, Gilliosa Spurrier Violeta Astratinei

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A very warm welcome to the 2019 edition of the MPNEhubs workshop in Krusenberg!

Effective advocacy Everyone of us became a patient advocate because Melanoma affected us personally.

However, effective advocacy requires not only motivation but also knowledge and strategy.

MPNEhubs 2019 will therefore look in depth into a number of topics we have encountered in our network during the last year- time to learn and time to turn knowledge into effective advocacy action!

IMPORTANT Please bring your laptops or tablets for the group work Trello for preparation here

So we are looking forward to yet another productive MPNEhubs workshop and to seeing you in Krusenberg!

Bettina, Gilly, Fredrik and Violeta MPNE

Online version of the program here

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program version 20th November 2019

Friday, 22rd November 2019 Please bring your laptops or tablets for the group work

Arrival and registration- please check the transfer sheet 14.30- 15.30 Coffee and catch up with your colleagues!

15.30- 16.30 Introduction to the weekend: Effective Advocacy Meeting objectives 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 17.30- 18.00 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- collaborating across cancers Gilly Spurrier 20:00 Dinner

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Saturday, 24th November 2019 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 12.00- 13.00 Lunch 13.30- 15.00 Value Assessment Frameworks and Patient Preferences Axel Mühlbacher, Hochschule Neubrandenburg, Germany 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 17.30- 18.30 Effective communication in advocacy: Tips and Tricks Petra Naster, Vital Transformation 19.00- 19.30 Glögg och Pepparkakor Join us for a very Swedish tradition 19.30 Julbord Dinner

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Sunday, 25th November 2019 Advocacy Day MPNE members only 8.00- 9.00 Breakfast please make sure you check out 9.00- 10.00 30’ MPNE advocacy: working effectively 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 What’s coming next? MPNE 2020 • • •

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, other opportunities 12.30- 12.45 Workshop Summary and Closure Bettina Ryll, MPNE 13.00- 14.00 Lunch and Departure

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Safe travel home and we hope to see you again soon!

We rely on your feed-back to make events as relevant as possible for you- so please don’t hold back!

Reimbursement You will receive detailed instructions after the event by email.

Reimbursement up to the agreed limit and against complete receipts only. There are 2 deadlines for reimbursement: the early bird one after which we process immediately and the laggard one after we have received all outstanding information, so this can take time.

Please note that we now process everything electronically, so no more paper receipts to post!

Good to know The Swedish currency is SEK 1 Euro = about 10 SEK You will be able to pay by card in most places, including taxis. Cash machines are also located in the arrival terminals of Stockholm Arlanda airport.

Weather Please prepare for the Swedish weather and check the weather report before travelling- we already had the first snow, so please bring hats, gloves and appropriate shoes.

Closest Airport Stockholm ARLANDA is Sweden’s main airport and ca 30 min drive away from Krusenberg Herrgård.

Arlanda Airport to Krusenberg The best way to reach Krusenberg is by Taxi. We will arrange transfers for those of you who have submitted their flight details on the logistics sheet on slack. Should you travel independently, make sure you take an Uppsala (not Stockholm) taxi and have the hotel details including GPS coordinates and a phone number at hand- Krusenberg is not far but remote.

Krusenberg to Arlanda airport We will arrange transfers from the hotel back to Arlanda at the hotel. Should you travel independently, the hotel will be able to help.

Incidentals The workshop budget covers workshop participation, accommodation and meals; please note that you will be responsible for all other incidentals like extra drinks and additional nights.

Contact during the workshop best via our Slack platform!

Bettina Ryll +46-722297272 Gilliosa Spurrier +33-676318349 Violeta Astratinei +31-646699527

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This event was made possible through the support of

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